Category Archives: Interview

Interview with our Wonder Woman, Lorraine!

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We thought it would be perfectly appropriate this month to interview Lorraine Ruiz-Montgomery, who has been an integral part of the SSP team for 4 years now and has just won the latest SSP award for the Core Value “Good is the Enemy of Great”!  I’m sure almost all of you have had interaction with her, whether it is when she greets you at your little one’s visit with her welcoming smile, or when she helps you with your questions on a phone call.   Let’s learn more about our wonder-woman Lorraine in this month’s interview!

Can you tell us a little about you and your family?  Do you have children?  Do you have any special interests or hobbies you can share?

I am a mom of 2 boys: my oldest is 17 years and my little one is 8 years.  I have been with my husband for 26 years.  I consider myself to be compassionate, well-organized and hard-working.  A special interest of mine is comic superheroes.  My favorite superhero is Wonder Woman.  I have always looked up to her since I was little because she is a strong and fearless woman that I thrive to be every day. My hobbies are relaxing, watching TV and designing/polishing my nails.

Congratulations on your recent award!  What does receiving this mean to you?

Receiving the award for SSP Core Value #4 “Good is the Enemy of Great” is a great honor to me because I am always looking for ways to better myself and my team members.

What is your position at SSP, and what are your main responsibilities?

I am the Practice Manager at SSP.  My responsibilities consist of supervising/organizing the team, planning the appointment schedule for our providers, reviewing the medical records and opening accounts for transfer patients and assisting with billing.

How long have you been with the practice, and what did you do prior to this?

I have been with SSP since 2013.  Prior to joining SSP I was a front desk receptionist at a Veterinary Hospital.

What would you say is your favorite part of your job, and what is the most challenging?

My favorite part of my job is being able to help parents and my SSP family in the time of need.  The most challenging part of my job is building my confidence to present projects during our team meetings.

Is there a special experience at SSP that you’d like to share, perhaps something that is meaningful to you?

My special experience at SSP that is meaningful to me is working with such amazing team members.  I also want to thank Matteo and Dr. Cao for giving me the opportunity to flourish in an amazing company.

I think patients see SSP as an extension of their own home, a place for them to feel comfortable and part of a loving and supportive community.  You are a big part of this, always helping in any way you can. How do you personally see that every patient’s needs are met?

I try hard to listen to their concerns.  Being that I have 2 boys of my own, I feel that it is easier for me to relate to their issues.  We are all human and we can connect at that level.

Interview with Speech Pathologist, Rachel Cortese

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According to the CDC’s Autism and Developmental Disabilities Monitoring, approximately 1 in 68 children have autism spectrum disorder and around 1 in 6 children in the US have a developmental disability.   It’s critical for these children to have a strong support system in place, and that the child’s parents and caregivers be equipped with the proper tools as to how to best interact and communicate with their child.   Here is where Rachel Cortese, one of the awesome South Slope Pediatrics moms, comes into play.

Rachel is a renowned Speech Language Pathologist based out of Brooklyn with over 12 years of experience. This February she is introducing a parent-based intervention program for parents of children with Autism Spectrum and Social Communication Disorders at Brooklyn College, which will help provide parents with the tools they need.   Let’s get to know her and learn about her invaluable program in this month’s interview!

 

SSP:   Before we dive into this program you are launching, can you please tell us a bit about yourself and what it is that you specialize in?  

 

Sure! I live in Brooklyn with my husband and two sons. I am a pediatric speech language pathologist and behavioral therapist. I work with families in Brooklyn, Manhattan and East Hampton, NY. My expertise is in the evaluation and treatment of toddlers with delayed language development, children with stuttering disorders and speech sound disorders, and communication impairments associated with autism.

In terms of my training, I completed a Masters in Communication Disorders from the University of Wisconsin-Madison and obtained a Masters degree in elementary education from St. Joseph’s University. I am currently working toward board certification as a Behavior Analyst and have completed advanced trainings in PROMPT, a specialized technique used to facilitate oral motor skills and to remediate speech production disorders, The Lidcombe program, an early intervention behavior based treatment program designed for preschool children who stutter, and the Autism Diagnostic Observation Schedule (ADOS-2), a standardized observation designed to assess behaviors related to autism spectrum disorders.

Prior to studying Speech and Language Therapy, I taught Middle School Mathematics for two years in Philadelphia as a Teach for America corps member. I am passionate about the outdoors and taught adaptive skiing to people with disabilities at The Breckenridge Outdoor Education Center in Colorado, and worked as a field guide at wilderness therapy programs helping teenagers who struggled with a variety of behavioral and emotional issues.

 

SSP: What is it about being a speech language pathologist that you are the most passionate about, and why did you choose to focus on this field and specialty?

 

Any parent can attest to the magic of watching their child learn new things and acquire new skills during their first few years of life. Speech and language is one of the first windows we have into the brain and the learning process. I’ve always been fascinated by this process and now as a mom of two young boys, “on the job training” has a whole new meaning!

Even though I have chosen to focus on the study of speech and language development, language doesn’t exist in a vacuum and is influenced by so many other things (a child’s attention, learning, temperament and environment to name a few). I work alongside and am always learning from brilliant colleagues who specialize in different aspects of child development and I get to wear so many different hats as I work to facilitate speech, language and behavior changes in a naturalistic and well-coordinated manner.

I am most passionate about the intersection between language development and behavior. Effective communication skills are central to a child’s overall wellbeing and when children don’t have a way to express themselves effectively or efficiently, frustration can set the stage for maladaptive behaviors. Although I see children of all ages (birth to seventeen), I find the early developmental period most interesting and ripe for change. I specialize in helping parents learn strategies to successfully shape their child’s communication and behavior skills.

 

SSP: What are some of the more common speech issues you encounter with kids on the spectrum and other social communication disorders?

 

Since no two children with a diagnosis of ASD or social communication disorders are alike, this a difficult question to answer. Some children have significant difficulties with speech production and expressive language and other children with ASD demonstrate advanced speech and language skills. However, although this will look different for every child, one thing that these children tend to have in common is some level of difficulty initiating interactions with others, staying in an interaction with others and difficulty with other aspects of social communication like turn taking or playing appropriately with others.

 

SSP: Let’s talk about the program you are launching February 9th, “More Than Words – the Hanen Program for Parents of Children with Autism Spectrum Disorder”.   What is this program and who is it for?

 

More Than Words® — The Hanen Program for Parents of Children with Autism Spectrum Disorder®, is an evidence-based, twelve-week, program for parents and caregivers of young children (ages birth to six) with Autism Spectrum Disorder (ASD) or Social Communication Disorders. In a small group setting, parents and caregivers will learn skills to enhance back-and-forth interactions with their children, help improve their children’s social skills and their understanding of language.

The More Than Words® program consists of three individual family sessions and nine small group, parent/caregiver only, training sessions. By the end of the program, parents will know what to say and what to do to be their child’s most important communication teacher. The strategies will become a natural part of the way parents interact with their child.

During the 8 group sessions families will learn step-by-step, how to:

  1. Recognize their child’s stage and style of communication so that they know which steps to take next
  2. Identify what motivates their child to interact with them
  3. Adjust everyday routines to help their child take turns and keep interactions going
  4. Follow their child’s lead to encourage him or her to take turns in an interaction and communicate
  5. Implement strategies in their everyday interactions to help their child understand language
  6. Tweak the way they play and read books with their child to help him or her learn language.
  7. Learn to foster longer, more meaningful interactions and improved social skills

 

SSP: It seems like this is not only an opportunity for parents and caregivers to learn how to make their interactions with these children the most meaningful they can be, but it’s also a chance for them to meet and connect with other families struggling with similar experiences. Do you find parents and caregivers often are lacking the support they need and perhaps feel a bit of isolation?

 

Absolutely. Parents who have previously participated in this program report that one of the greatest benefits of the More Than Words Program is the opportunity it provides to connect with other parents. Parents and caregivers will meet other families in the same situations and will have an opportunity to share experiences, learn from each other and hopefully make new friends with other families who understand their unique challenges.

 

SSP: In your opinion, what is the biggest benefit for those that take part in this 12 week program?

 

Besides the connection with other families, the More Than Words program was developed by expert speech-language pathologists and is grounded in extensive research. The strategies parents will learn can be used naturally, throughout every interaction with their child. Since parents spend the most time with their child, this type of intervention can be way more effective than taking your child to speech therapy once, twice or three times per week. Actually research has shown that trained parents are more effective facilitators of communication development than weekly visits to a professional.

 

SSP: Is there a website one can go to for more information on this program? For those who cannot attend, what do you suggest they do?

 

Yes! For families who want to learn more about the upcoming program at Brooklyn College, they can check out the program details on my website:  http://rachelcortese.com/parent-training/parents-of-children-with-autism-spectrum-disorder/.  Families are also encouraged to contact me directly by email or by phone for more information and for registration information.  My contact information is on my website and below.

For families who can’t attend, I’d encourage them to visit my website to learn more about the individual services I offer or to set up an individual consultation.
The Hanen Centre’s website also has a ton of amazing articles and accessible information for families. The Hanen Centre was founded in 1975 and is a Canadian not-for-profit charitable organization whose mission is to provide parents, caregivers, early childhood educators and Speech-language Pathologists/ Therapists with the knowledge and training they need to help young children develop the best possible language, social and literacy skills.

 

SSP: Do you have any words of encouragement for those families who have a child with autism or another social communication disorder?

 

Many parents worry about what will become of their children, and when you have a child who has unique and special needs, it’s only natural to wonder about this. While none of us can predict exactly what the future holds, the good news is that the brain is plastic and has the ability to change structurally. This means that children continue to learn throughout the lifespan and research has shown that intensive, early intervention has can “re-wire” the brain. When parents learn strategies and learn to implement them consistently and effectively, they can successfully shape their child’s communication skills, positively affect parent-child interactions, and facilitate behavior changes.

 

Place: All sessions will be held at The Diana Rogovin Davidow Speech, Language, Hearing Center, 4400 Boylan Hall, Brooklyn College, 2900 Bedford Avenue, Brooklyn, NY 11210

 

Cost: $150 per family for the entire 12 week program

For registration and more information please contact:

Rachel Cortese, MS Ed, MS CCC-SLP

Email: Rachel.Cortese@brooklyn.cuny.edu

Phone: (347) 471-0596

Interview with Matteo Trisolini, a “Superdad”, a Culture Revolutionary and Co-Founder of SSP!

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We all know Matteo as the “papa” at South Slope Pediatrics, taking care of everyone on the SSP team.  Matteo is involved in all aspects of the practice – if you’re lucky he will greet you when you call and you’ll hear his charming Italian accent!   He has helped South Slope Pediatrics become fully integrated into the South Slope community, while at the same time building community within the practice itself.  Matteo has developed classes to help support our families, from breast feeding to CPR to children’s nutrition and more.  He has become a pioneer of charitable causes, supporting both local and national charities, even launching the Love in a Safety Pin Campaign, supporting tolerance, love and kindness.  He’s the Culture Director at SSP, committed to establishing and embracing core values we hold dear.  Just when you think he does it all – did you know he’s also a super talented photographer and artist?  He’s also a social media guru!  What does Matteo NOT do?   Let’s get to know the man behind the practice in this month’s interview!!!

Can you tell us a little bit about your childhood, growing up on the coast of Italy and how your journey brought you to NYC?

I was born in Bari, Italy. Bari is a small city on the coast of Puglia.  I was basically born and raised on the beach, so that is the culture I have.  Culture of family first.   Everyone there has lunch, dinner, every single meal at the table together as a family.  In my family I’m the only crazy one who at one point decided I couldn’t see myself living there.  So, I decided to pursue other options.  Initially in 1996 my mom and dad celebrated their 25th anniversary and they took us on a vacation to the US to celebrate.   When we landed in NY I could not forget the moment I put my feet on the ground and said “Wow, this is real.  This is not the movies.  This is real”!  As soon as I did that I realized that I felt like I was home,  a completely real and unexpected feeling at 22 years old.   It was incredible and weird.  So, with that – that trip opened up my eyes to new possibilities.  At that time I was studying marketing and management in Italy.  I decided to do whatever I could to live in the US as the US would be able to offer me more opportunities than I could get in Italy.  I also wanted to transition from marketing and management to photography.  I fell in love with being creative as a small child.  I looked into the Fashion Institute of Technology – but at that time the cost of school was impossible.   $21k plus boarding and everything else.   I didn’t have any of that.  Our family had spent everything on our trip to the US so there was no way to do it.  I had to look into a different way to make it happen. I found the University in Milan that only cost $5k a year, which I could afford, and it had an exchange program with the School of Visual Arts.  The exchange program was on a scholarship basis, and only one student could be awarded that scholarship each year.  By the end of 2nd year I won the scholarship and spent six months at the School of Visual Arts.

I went there for the beginning of my 3rd year, spending 6 months, and never wanting to come back.  I had no money….I had just enough money for my bagel and cream cheese in the morning and Wendy’s for my lunch.  That was all I could afford.  My family is not wealthy, but they did an amazing with my brother and myself.  Taught us that you have to go get it and make it happen!  Soon, my photography would start to help pay my rent.  From there I had to graduate in Milan.  While on scholarship in NYC I found a sponsor that would help me come back and work as a photographer.  That was back when there were no wrinkles on my face!

Not many people know that you are also a talented artist, and a very successful fashion photographer, eventually founding Matteo Trisolini Studios.   Can you tell us more about this prior life of yours?   I understand you even designed concepts for Grammy Award nominees!

Basically after graduating I told my mom that I’m leaving Milan and going to the US.  Of course she said “you’ll be back within 3 months”.  17 years ago I arrived in the US,  the year before 9/11.  I was able to thrive as a photographer working for Simon and Schuster doing covers for their books, magazines and commercial advertising.  It was a different NY. A NY were there were no limits on budgets, there were cash advances…the creativity was incredible. People who knew what they were doing and had culture in visual communication were still working and there was an incredible energy.  When I founded Matteo Trisolini Studios, I had a studio in Chelsea, on 25th between 10th and 11th.  I miss that energy.    Then…I met Dr. Cao.

How did your life take the turn to healthcare, and starting the practice we have all come to love?  How has becoming a parent affected this choice?

I met Dr. Cao when he had just started working as an attending doctor at Methodist Hospital.  He was done with residency.  That is a big deal, as during residency you do not have time for a social life and cannot settle down.  So he was done with that and had been working for a year and half as an attending doctor at Methodist.  We actually met because we lived in the same building in Battery Park. We both had gotten into this building because of the grants after 9/11.  We were both able to live in this beautiful landmark building.  We were also coincidentally playing volleyball in a gay volleyball league.  We didn’t know this until one time we saw each other in the building as we were on our way to volleyball.  We didn’t know we lived in the same building.   We didn’t know we played in the same league until that morning.  That morning in this big grand hall with big arches – he looked at me and because of what i was wearing and my mohawk….he asked if I was going to play volleyball in the league.  That was the beginning.

From there, we were married and had Isabella.  That’s when I transitioned. When I had her I realized I had to make a choice.  I could still be a photographer in the fashion industry.  In order to be successful in that industry you have to have a big ego. That also means not a lot of family time, and having to go to parties, travel here and there, working weekends and surrounded by a certain type of people.  I made a decision to put on the brakes until Isabella was about 16 months. When I was ready to go back to work, I decided that I wanted to be behind the scenes instead of at the front.  Still working in the photography industry but as a producer.  With this in mind, I was putting my resume together when Hai said that he always wanted to open his own practice.  He said “If I don’t do it now, I’ll never do it.  Do you want to do this together”?  I said OK!  I had zero experience in healthcare but did have experience creating a business from the ground up, and running a business marketing wise. I knew what he wanted to be seen as – not a big doctor with a big fancy office and five thousand locations…but a small town doctor.  That is what we first told everybody.  You will always have a chance to see your doctor.  It’s nice to see people and know their names and remember their names.  The fact that they know that I’m married to him and this is our family business.  It’s very unique.  From the very beginning our motto was “Family First” and when people try to take us down, we said: let’s put our heads down, think about what we want to accomplish and what we want to give our patients.  Let’s focus on all the good we can give to anyone we interact with, one patient at a time.  This is still a rule that applies today.  We have a lot more patients and attention that we used to have – but the message is still here.  Think about what good things you are accomplishing every day with our patients, and always giving them the greatest experience of their day.  That’s our goal.  Always go above and beyond to help and give them the most pleasant experience of their day.

Having Isabella helped me understand being successful in the arts wasn’t so important to me,  because that was all about me.  When you have a child you exist but it’s not all about you anymore.  This venture was more about making it about me AND my family.  Having a family and staying in the fashion/commercial photography industry didn’t work together for me.  Family comes first, then everything else.  I learned that when having Isabella.

We all love South Slope Pediatrics for many reasons.  It has that old-school “small town” doctor feel.   Parents develop real and trusting  relationships with the doctors.  How do you maintain this close-knit environment in a fast paced city like Brooklyn?

We invest so much time and energy on this.  This is why company culture, which is something we work on every day, is really important.  We have to walk the walk.  We are not interested in opening many locations nationwide. This is not who we are.  We opened this office in 2012 because Dr. Cao wanted to focus on building relationships.  Still to this day building relationships is the most important thing.  Relationships are not only between the doctor and patient.  It’s between anyone on this team and anyone else.  It is between two SSP members. Between any SSP member and a patient – whether face to face, on the phone, on email or on social media.  With any encounter we focus on that relationship.  We promise that we are here to listen and we promise to always be kind to you.  We promise that we will always be helpful and we will always strive to go above and beyond what is expected and required.  Patients know that when they call they don’t need to scream at anyone.  They know they can count on us listening to them and helping them.  That is very important.

The trick is that we ask each individual on any media to reciprocate that behavior. To be kind, to be helpful, to listen and be humble so we can establish that relationship with them.  When you have a baby you go to the pediatrician in the 1st few years a lot.  When you come here, you should feel like we are your extended family and you are home.  We are here to help you.

The close relationship with the practice is not only experienced at doctor appointments.  You offer ongoing support for the parents, offering free courses in the office and sharing helpful and engaging articles and posts on social media.  Why do you think this is so important?

When I had isabella in 2010 I was a first time parent.  Dr. Cao went back to work right away.  I was home with Isabella, and as you might know – that can be both the most fantastic and also the most isolating thing that can happen to you, especially true if you don’t have family around and your close friends are working.  It was wintertime, and it was a hard winter.  I didn’t go out, and I didn’t have a network.  I’m hoping today it’s different but at that time there weren’t any daddy groups, only mommy groups.   It’s very hard to make connections and do something social.  By the time my husband was home at night, I wanted him to take the baby.  “Let me sleep”!  I would say.  Social interaction was so difficult to find.  When we opened the office we thought it would be great to help bring our families together.  Maybe we can help them go get a coffee together, start new friendships.  Two main goals of the classes we offer are to provide tools to new parents that they wouldn’t necessarily acquire during the doctor visit (CPR for example), and the 2nd goal is to get people together with the same age children and understand they are not alone, and what they are experiencing is normal.  You can go crazy when your 2 month old is screaming at you.  Then you see that mom or that dad is going through the same thing!  We offer the skill and let them get to know each other, building community in a small but important way.

As for social media, that is today’s hangout.  It’s the new park or where you go with your stroller. It’s where we meet together.  You want to provide a service to your patients in any way you can.  It’s a new way to reach out.  It’s not a place to answer medical questions, but we can offer tools, advice or stories where we can all connect.

Another reason we love SSP is how the practice goes BEYOND just being a doctor’s office.  You are fully committed to the South Slope community, from ongoing fundraising for Jonah’s Just Begun to supporting our local schools.   Can you please tell us more about what SSP does here in the Slope?

First of all, we would like to do more than what we do.  With a small office, it’s not always easy to coordinate and to deliver.  Its most important that you pick what you do well and do that thing well.  We want to do it the right way.  There are some organizations that we work with, like Jonah’s Just Begun,  which is close to our hearts.  Jonah has been a patient of Dr. Cao’s since he was just one year old.  Dr. Cao helped in diagnosing him, and we want to always continue to support him in any way we can.  The schools are important as that helps our children have more tools in their hands.  There are other projects that I’d like to tackle and local organizations that help kids who aren’t as lucky as our kids.  I hope that we are able to get involved with more projects soon.   We are here to create community, it all goes back to the fact that we are part of the community and want to help it grow.

Your email signature says “Father and Culture Revolutionary“.  Can you please explain what “culture revolutionary” means to you?

Everyone here on the SSP team has in their email signature who they are (mother or father for example).  Most of us are parents.   We always say who we are first.   Then, the second part is what we are passionate about.  For me, it’s being a culture revolutionary.  I’m interested in culture.  I am a revolutionary because I understand there is a need to express who you are and what you believe in as an individual and as a company.  Company culture is a relatively new concept.  Let me give you an example.  At SSP we come together as a team and share core values.   We have a set of 10 values that we share, being humble being one of them.  It’s something we all believe in and can relate to.  We follow this every day, being on the phone scheduling appointments or helping someone who wants to transfer with an insurance we are not contracted with.  We help them find a new doctor within their insurance.  I’ve always been interested in investing in the people that make SSP.  Everyone who works here understands that  no one works FOR someone, but that we all work WITH someone.  It’s important that our team members are happy.  You can’t deliver a great experience if your team members are not having a great experience.  It’s something everyone here understands and appreciates.  It’s how we are able to go above and beyond in our day to day.  I pushed myself to save money and attend the @Zappos culture camp last year.  When I sat in that room for those 3 days I felt at home.  They spoke my language. They helped give me the tools for what I needed to accomplish.  I’ve been incorporating what I’ve learned here.  We have a culture team at SSP that makes sure our culture is clear to everyone who works here, our patients who come here, and anyone who is interested in joining our family.

I think the great love and compassion you show the South Slope Pediatrics families starts with the love you have at home with Dr. Cao and your beautiful daughter.  Any words of advice to all of us, trying to be as hopeful and positive as we can when looking at the new year? 

We know that we might be looking at difficult times ahead but we also need to focus on the good that we do every day, one person at a time. That’s how you continue, not listening to the noise around you.  Focus on the good that you do, one person at a time, every day – then you don’t lose the focus.

 

 

 

Interview with the Renowned Artist and Native New Yorker, Ida Pearle

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We are so very honored to interview Ida Pearle this month, a mother and patient of Dr. Cao’s, as well as a highly accomplished and renowned artist, writer (and violinist)!   Her artwork is both comforting and inspiring, beautifully depicting movement and capturing the innocence and magic of childhood.  Her first book, A Child’s Day: An Alphabet of Play was chosen as a best children’s book of 2008 by Bank Street College, and her newest title just released last year, The Moon is Going to Addy’s House, is an American Library Association Notable book and has received exceptional reviews.    Make sure to keep your eyes open at your next visit…her incredible artwork is about to grace the walls of South Slope Pediatric’s lobby!

SSP: Can you please tell us a bit about your background growing up in NYC and how the culture helped shape you as an artist and as an author?

I recently published a book about my childhood in New York called “The Moon is Going to Addy’s House”. It’s about a car ride from city to country that I took every weekend as a child.  I spent 5 years creating it, which was a wonderful opportunity to meditate and reflect on my New York city childhood and it’s richness.  I feel very attached and connected to my childhood places, be they neighborhoods or homes. I grew up in New York- late 70s/80s it was a very different place; my experience was a much more bohemian one than is possible today I think. My father was a sound engineer, and had a recording studio in our loft, and my mother was a painter.  I was surrounded by people creating constantly and my identity as an “artist” already strongly formed in childhood. My parents protected my free time and made sure I always had paper and pencil. I spent a lot of time as a child at the city’s art museums, The Met and The MoMA, and had access to tons of visual material, like my own large collection of children’s books and my mother’s art monographs. My parents were incredibly encouraging and really made art the center of my universe. In this way my focus today is very much a continuation of what it was in childhood, and my work is very much the blossoming of seeds planted in my childhood. The other lucky thing that plants my work geographically in New York was my going to the United Nations International School as a child. New York is already an incredibly diverse place, but UNIS was even more of a microcosm- every student hailed from a different country and that experience more than anything has informed my aesthetic. I aim to create inclusive imagery and a diverse representation of children. My commitment to celebrating the beauty of diversity is rooted in my experience as a child in playing with children who were different from me. Celebrating our common humanity is something I like to think we are especially good at doing as New Yorkers.

SSP: Who were your favorite illustrators and authors as a child, and how did they influence you?

Growing up I loved Robert McClosky, Ezra Jack Keats, Nancy Ekholm Burkert, Ludwig Bemelmans, Leo Lionni and Maurice Sendek of course. I think a few on this list were incredible draftsman- like Robert McClosky and  Nancy Ekholm Burkert, who also made work outside of the tradition of children’s literature. I think perhaps Ezra Jack Keats and Leo Lionni have influenced my work more directly in terms of simplifying forms in my own work (as well my our medium – cut paper) I think children are attracted to that simplification, and I have always been attracted to minimalism. It takes a lot more mastery of form to pare things down to their most essential.

SSP: As a creator of fine art for children, what mediums do you use? How would you describe your work?

My work is originally created in cut paper collage. I use a lot of drawing to produce the imagery- but then it all has to be cut out with an exacto knife and glued together.  I suppose I would describe my work as being about gesture, movement, and pattern. I’m very interested in the human form, how it moves through space, and the challenges of depicting that on a flat plane. It’s very interesting to have to create something from nothing and to have it convince the eye of something very specific, like weight, volume and/or velocity. I think there is a magic in art- the marriage of technique and imagination which transports you to a place beyond the page. Thematically, I aim to capture the happy and care free nature of childhood, and to create images where all children see themselves represented.

SSP: I understand you do unique customized pieces of artwork in addition to fine art prints – can you please tell us more about that?

I love to create collages for children and families’s homes. Mostly these pieces are bespoke and one of a kind. I’ve been doing this for nearly 20 years and I’ve gotten to hear how these pieces have become special family keepsakes that are treasured for a long time- which makes me very happy! It’s a very special process getting to know and depict a family through creating an art work for them! I treasure these experiences.

SSP: Your most recent book, The Moon is Going to Addy’s House, has received such incredible high praise. To quote Martin Scorcese, “The Moon is Going to Addy’s House is visual storytelling at its very best. The emotional journey of the children is beautifully expressed through Ida Pearle’s stunning use of collage, color, texture, and movement”.  How do you think you are able to connect so strongly to the reader? 

Well, first of thank you.  I’m very honored by these words, to say the least. I had the great honor of teaching Scorsese’s daughter private art lessons for 6 years, which is how he and his family came to know my book. I think the subject matter is highly relatable – how the moon follows us at night is a universal experience, and I think the visual part – the illustrations probably have as much if not more to do with how people consume this book in particular. I think children’s books are just as much about the pictures as they are about the story. We are visual thinkers first and foremost, we read in pictures before we read in words. Almost like hieroglyphs, they pick up on shapes and symbols first. There is a pictorial language that children react to and apply to their understanding of what is outside the page. I tried with Addy’s House to create a world children could really beam themselves into and see their own experience reflected. It’s an early and important phenomenological experience which is why we see it so much in children’s literature.

SSP: There is a very special relationship between a child and the moon, I see it in my own personal experience daily with my 4 year old daughter who almost treats it as a friend or family member of hers. “Look, mama – the moon followed us”! as we drive home at night. You capture that innocence and joy so well. Does this mirror personal experiences of yours as a child?

Creating ‘The Moon Is Going to Addy’s House’ was deeply meaningful for me. It is based on a phrase I used to repeat as a child on car ride from city to county to a cottage that has been in my family since the 1940s. My father and uncle, city kids used to play there in the summer, as did myself and my sister. My family over the years agreed that this phrase, (or idea) would make a beautiful children’s story. Children’s literature was very important in my family life as a child..

My father became ill about 8 years ago, and told me he really wanted me to focus on bringing this book into being. So, I did. He passed away 6 years ago and the last conversation we had was about the book; he looked at my sketches and encouraged me – he was an incredible cheerleader for my work. It was my opportunity to meditate on my childhood, his loss and to try to transform pain into beauty, which I think is the tool that art is. It’s a healing act, creating or engaging with art of any kind.

SSP: How has having a daughter of your own affected your work?

After depicting childhood, and motherhood for so long it’s opened up another dimension of my practice to me. I understand a mother’s love for the first time, which is different from only understanding a child’s love. I haven’t had the chance yet to make much new work, but when I do- I know I will have a deeper connection and understanding of children, and of parental love.

To learn more about Ida Pearle and her work, go to: http://www.idapearle.com

 

Interview with Dr. Danis Copenhaver

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Interview with Dr. Danis Copenhaver

 

For those of you who have not heard the exciting news…South Slope Pediatrics has now added a fantastic new full time pediatrician to the growing team!  Let’s get to know Dr. Danis Copenhaver, a new mother herself!

 

SSP: Welcome to South Slope Pediatrics!  Where did you practice prior to joining SSP and what brought you here?

Thank you! I am so happy to be a part of the South Slope Pediatrics Family. For the past two years I have been practicing pediatrics in Brooklyn. After living and working here, and starting a family of my own, I knew I wanted to put down strong roots and South Slope Pediatrics was the practice to do that. Dr. Cao is an institution in Brooklyn–he is a skilled pediatrician with years of experience dedicated to family and community health; Dr. Wilson-Taylor actually taught me pediatrics at Weill Cornell in medical school, and I have always admired her intelligence and approach to medicine. And then I met Matteo and the rest of the team! I have never met a more competent and friendly group of people committed to going the extra mile for their patients. I knew that joining the practice and working alongside these amazing people would be the right fit for me.

 

SSP: Please tell us a little about yourself. Where you are from? Do you have a family of your own?

I am a Southern woman, who has found a home in Brooklyn. I was born and raised in a small town in South Texas, and moved to Conway, Arkansas when I was ten. I attended the University of Arkansas where I majored in Biochemistry, rowed crew, and met my future husband, Drew. After graduation, we spent a year living in Belize partnering the University of Arkansas with the nonprofit organization Peacework to create a service-learning study abroad opportunity for students at the University. After Belize, I moved to New York City to start my medical training at Weill Cornell Medical College, and completed my residency at the Children’s Hospital of New York – Columbia University. Drew and I were married in 2011 and we just welcomed our son, Elo, in 2016.

 

SSP: It must be invaluable to relate on a personal level to new moms and dads. Do you have any advice for new parents that you wish someone had shared with you?

So many of my patients would comment during my pregnancy about how being a pediatrician would affect being a new parent, but it was another pediatrician/father who told me, “Being a pediatrician won’t make you a better parent, but being a parent will make you a better pediatrician.” And I have totally found that to be true. I have such a deeper understanding and empathy for the struggles of new parents–this is really hard work! While I still consider myself to be a novice parent, my advice-though not novel-would be, take a deep breath, trust your instincts, and everything will be better after a nap.

 

SSP: Do you enjoy any special hobbies or activities during your “down time” (if there is a such thing with a newborn)?! Any special interests?

You are right about lack of “down time,” but thank goodness for a Kindle for middle of the night feeds! I love to read and have been able to do quite a bit of it during my maternity leave and now commute to and from work. I also love listening to podcasts. Any interesting information outside of medicine and parenting these days comes straight from a podcast.

Drew and I love traveling, cooking, and bike riding. I also enjoy camping and hiking and hope to take Elo on his first campout in the Spring.

SSP: What led you to decide that you wanted to study pediatric medicine?

Since I was four-years-old I have been drawing pictures of myself with a stethoscope, and that desire to be a doctor stayed with me throughout my education. I have also always taken care of children in some capacity. I watched my younger sister and cousins growing up, started babysitting in my neighborhood at 11 after getting Red Cross Certified, nannied in high school and college, and was the president of Camp Phoenix, a camp for pediatric burn survivors, in medical school. Kids bring me such joy! But I knew I wanted to practice pediatric medicine when I met the doctors, nurses and patients during my pediatrics rotation at Weill Cornell Medical School. I fell in love with the idea of taking care of not only the patient but the whole family. I was engaged with pediatric disease processes, unique and distinct from adult medicine, and I was awed by the dedication and care of the people who practiced pediatric medicine. Within a week on that rotation, I knew I had found the field of medicine I was going to dedicate myself to.

 

SSP: What do you find most fulfilling as a pediatrician? Can you please share any experiences you’ve had that has helped shape you as a person and as a doctor?

I find the continuity of care the most fulfilling part of my job–getting to know a patient from birth and following them through adulthood is incredibly rewarding. This sense of dedicating myself to a family likely stems from growing up in a small town with a general practitioner who took care of my whole family. From the everyday colds, to treating me for burns after an accident I had when I was 7, he was a constant in the care I received in my childhood. He even threw a big Halloween party every year that the town went to! Even though we live in a big, bustling city, I hope to bring some of that small-town medicine to my practice and my patients.

Interview with Dr. Wilson-Taylor

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From the moment I met Dr. Wilson-Taylor I knew she was a perfect fit for the practice.  So warm and personable, caring and kind.  A smile that welcomes us and makes us feel confident that we are in the best of care.  A presence that makes us feel safe and calm.  Many of us have gotten to know her as the awesome doctor our child is lucky enough to see, but we ALL want to know more!!!!  Let’s learn about her in this month’s interview.

SSP:  Can you tell us a little about where you grew up and your path to becoming a pediatrician?

I was born and raised in Canarsie, Brooklyn. I always knew I wanted to be a doctor since I was in elementary school. I did a few science programs in high school and only became more fascinated in the sciences and health professions. Even though I felt passionate about being a pediatrician, I kept my mind open throughout medical school. I always found myself playing with children of my adult patients, or taking care of the newborn after a delivery and knew that providing care for children was my true passion.

SSP: Tell us a little about your family, I understand you are a mom of 2?

I am a first-generation American born. My parents are from the West Indies. My son is 9 and my daughter is 7. They are the reason I switched from academic pediatrics at Cornell to private practice here at South Slope. I wanted to be closer to home so that I could spend more time with them during their formative years. I have been married for 12 years to my childhood sweetheart.

SSP:  As parents we are always striving for a somewhat unattainable word “balance”.   How do you try to maintain balance as a doctor AND mom?

This “balance” is very tricky for working families. A couple of years ago, I made a list of ALL the activities that I do, their importance and how much time I spend on each one. It made me re-prioritize different aspects of my life, which led me to join the SSP family. It allows me a chance to be a professional and still make time to get home each night and spend time with children, finish up homework and still take them to activities on the weekend.

SSP: How has being a parent affected your perspective on being a pediatrician?

I know many great pediatricians that don’t have children, but being parent does give me a chance to take a step back and put myself in the shoes of the families of my patients. I realize the way pediatricians talk with families and patients is just as important as the diagnosis being made. I try to take my time and make sure parents understand why I am prescribing a specific treatment and are able to make informed decisions to best take care of their child.

SSP:  When you aren’t busy being a mom and a pediatrician, what do you enjoy doing in your spare time? 

Spare time…I like to cook and am working on my gardening skills. I enjoy fitness and try to get to a cardiokick class once a week and do workout videos at home.

SSP: What is the aspect of being a doctor that brings you the most happiness?

Whether its an infant with a cold or more life-altering moments, to be a constant support and sounding board for a family brings great joy. As a pediatrician, in just a few minutes, I can tell whether a child is really ill and to be able to tell a parent that their child is “fine” can put them at ease.

Get to Know the Innovative Founder of Court 16, Anthony Evrard!

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Are you an avid tennis player and want to get your little one involved?  Or do you have a child interested in tennis and you’re looking for a place to nurture their love of the sport?  OR…not a tennis player, and wanting to introduce it to your family?  Right around the corner in Gowanus you will find Court 16, the first (and only) kids tennis club in Brooklyn.  This state of the art facility was created with kids in mind, from kid size courts with cushioned surfaces to bathroom sinks at kid-height.   Tennis has so much to offer our children, like aerobic fitness, fine motor control, better eye-hand coordination, discipline and learning sportsmanship, among many other benefits.  Finally we have a place dedicated to this great sport right here in Brooklyn!  For this month’s interview we decided to talk to the founder of Court 16, Anthony Evrard.

SSP: I understand Court 16 is the first and only kids’ tennis club in Brooklyn.   What does that mean – smaller tennis courts?  What do you specifically offer for the kids?

We offer perfectly kid-sized courts, which means permanent USTA-sanctioned 30’, 36’, and 60′ tennis courts – the optimal size for child athletes.  This – along with the right instruction, racquet size and weight, and low-compression tennis balls – allows kids to grow at their own pace while building confidence and the right techique before moving onto the next format.  From the courts to the locker rooms to the teaching methodology, our facility adapts to the kids, rather than the kids having to adapt to it.  Based on their goals, kids can learn in private, semi-private, group, or camp sessions.  Group sessions maintain a strict ratio of no more than 5 kids per 1 instructor, to ensure kids receive the attention they need, and are structured based on the child’s age and skill level.

SSP: What is the mission of Court 16, in addition to teaching children how to play tennis?

Our mission is to offer a unique and holistic tennis experience to kids of all physical abilities, and from all social and geographic backgrounds, in a safe environment curated specifically for them. Our holistic teaching methodology incorporates technique, strategy, and sportsmanship, connecting mind and body to develop confidence while building a solid technical foundation and love for the sport.

SSP: Can you tell us a little about how and when Court 16 began and where the name comes from? 

Court 16 gets its name from court number 16 at founder Anthony Evrard’s tennis club in his hometown of Brussels, Belgium.  Playing on the court since the age of 3, tennis inspired him to develop a “blueprint for life”, cultivating qualities of discipline, focus and fair play that have benefited all aspects of his life.  Pulling from his decades of life in the world of tennis, Anthony’s desire was to create a modernized approach to the game, curated and remixed specifically for kids.  Court 16’s flagship location in Gowanus held its soft opening in October 2014 before opening its entire 15,000 sq ft space to the public in August 2015.

SSP: The photos I’ve seen of your facility are super impressive!  Can you tell us a bit more about it and your courts?

Court 16 has five permanent USTA-sanctioned 36’ tennis courts, a 30′ court for Little Freshmen (ages 2.5-3 years), and a 60′ court for advanced Juniors (ages 7-8 years), Seniors (ages 9-11 years) and adults.  All courts are built using PREMIER COURT surfacing, the most advanced impact-absorbing cushioning surface out there – which is especially gentle on growing joints.  Our bright and architecturally progressive interior is designed to excite young minds (and imaginations!), and a ton of other activations create a well-rounded experience – from ping pong tables sized perfectly for kids of all ages, to plasma screens showing iconic tennis matches.

SSP: I think our families would be very interested in learning about the unique offerings like the monthly kids’ movie night and weekly adult tennis night.   How do these events work?

We believe in playing and growing as a family, which is why our memberships offer special savings for siblings, and complimentary membership for the parents.  From themed kids events, to Friday Movie Nights for the kids and their families, to FOAM Tennis after-hours social events for the parents and friends, Court 16 is a community built for families.  Plus, our new Adult Tennis Fitness and Adult Beginners Classes help our adult members raise their game to the next level!

SSP: As you know we are a pediatrician’s office, with many young patients.  At what age do children become involved in the sport and how does it work for the very little ones?

Court 16’s classes are structured by age and skill set, and range from Little Freshmen (2.5 – 3 years) to Seniors (9 – 11 years).  We excitedly introduce our youngest group of Little Freshmen to their first tennis racquet, engaging them to make contact with the ball for the first time.  We’ll practice balance and movements through interactive drills, before moving onto exercises that build psychomotor and visual-motor skills.  And of course, parents and caregivers are welcome to join their little ones on the court.

SSP: Do you also host birthday parties, even corporate events?  What’s this I hear about foam tennis?

Birthday parties at Court 16 are designed to celebrate and engage kids, regardless of their level of tennis experience.  Parties run for 90 minutes and include 45 minutes on the court – for tennis games and activities – and 45 minutes in the party space – for cake and candles!

We host corporate events, team building activities, and leagues, incorporating Court 16’s FOAM Tennis for an engaging experience both on and off the court.  Inspired by racquet sports played on small courts throughout the world, FOAM Tennis provides a high-paced, stress-free version of tennis that maximizes the number of rallies, while minimizing the impact on joints.  It’s an awesome way for colleagues or clients to spend time together out of the office.

SSP: How does one learn more about Court 16?  Do you recommend a visit?

The best way to experience Court 16’s community is to come check it out!  To schedule a complimentary intro session and hang out with the team, visit our website, email us hello@court16.com, or call us at (718) 875-5550.

JACOB’S NEW DRESS – Gender Fluidity in the Words of Authors Sarah & Ian Hoffman

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As parents we are always looking to find books that are both entertaining and at the same time help teach valuable lessons. As a mother of two who grew up in an extremely homogenous (and often narrow-minded) small town, some of the most important lessons I believe we can teach our children is to think with an open mind, to embrace honesty, to not judge and to accept differences with an open heart.   Every now and again we stumble upon a book that not only our child loves reading, but also helps reinforce these values we hold dear. Jacob’s New Dress, by Sarah and Ian Hoffman, is absolutely one of these books.  It follows a little boy named Jacob who wants to wear a dress to school, and the struggle he faces in feeling so different from his peers.

 

SSP: Can you please tell us a little bit about your personal experiences that have helped shape your inspiration behind Jacob’s New Dress?

When our son Sam was two, he wanted to play with the toys and wear the clothes generally thought to be for girls: pink sneakers, pink t-shirts, flowered hats, and the princess dress-up costumes at preschool. Eventual Sam asked, “Can I wear a dress for real? To school?”

It was a confusing experience for us as parents as we tried to balance supporting our son’s intense desire to be himself with concerns about his safety. We joined a national support group for parents of gender-nonconforming kids, and found we were not alone. There were lots of parents like us, and none of us had resources to help our kids manage the complex social dynamics that come from being different. As writers (Ian as a children’s book author and illustrator; Sarah as a writer for grown-ups about kids and gender), it seemed natural to collaborate on a picture book about a boy who wants to wear a dress. It was our way to help other boys like Sam. Having a book where they can see themselves portrayed in a positive way is very powerful. And it gives parents and teachers a way into a conversation about acceptance of difference.

 

SSP: For all of the parents out there with gender-fluid children, this must provide immeasurable support….reading about another child out there that is so similar to them! Can you tell me about the most meaningful feedback you’ve received?

While it’s exciting to read good reviews in magazines and newspapers, the most meaningful feedback comes from individuals. Parents of gender-diverse kids (as well as gender-nonconforming or trans adults) from all over the world have written to us to share their stories—stories that are often heartbreaking as well as heartwarming. They send photos of smiling little boys wearing princess dresses and holding a copy of Jacob. Knowing we’re making a difference in a real child’s life makes us feel both immensely proud and deeply humbled.

In a recent visit to a K-5 public school, a parent cried as she told us how the book had transformed her whole family’s approach to supporting their son, how they moved from shame and hiding into acceptance and even celebration of their son. By the time she was done we were all in tears.

 

SSP: I personally appreciate how honest and realistic this book is. It is not easy being different, and reactions to being different can often be extremely hurtful. Why was it important for you to write in this way, specifically when you write about how Jacob “can’t breathe” when he’s in these circumstances? It tugs at a parent’s heart.

Thank you.

Life can be very difficult for kids who are different, in any way. Since our goal was to write the book in a way that portrayed a gender-nonconforming child in a positive light, we had to also be honest about what life is like for a child like that. While our son felt happy and free twirling in a sparkly dress while wearing a tiara, his experience with other people’s reactions (both kids and adults) was often deflating in a way that gave us that “can’t breathe” feeling. It’s a story we heard over and over again from other parents, and we felt that the experience needed to be reflected in the book.

Jacob’s New Dress was a hard book to write. We knew the joys and sorrows of Jacob’s life so well from our own son’s experiences. The early drafts were too intense for a young audience; it took a while to move away from the reality of our son’s story and come up with Jacob’s story, which is fictional and more appropriate for a picture book. You can read the real-life story of Sam’s first day in a dress here http://www.sarahandianhoffman.com/cookie-sh-article.pdf.

 

SSP: As a mother of 2, one being a 3 year old daughter…I see how innocently and beautifully they visualize the world. So accepting and open. No gender-bias. When she invites her boy friends over for a play date, she often asks if they want to play dress-up (which means a tutu in this house). She never questions or thinks why that would be different for a boy or girl. How do you suggest we help them maintain this way of thinking?

Bias is learned. Parents teach it, teachers teach it, television and movies and gendered aisles in toy and clothing stores teach it. Even if at home you support your daughter’s open-hearted free thinking, as she gets older it will become harder and harder to counter all of the gender-divided messages she’ll receive from the world. However….

We’ve learned that kids are pretty tolerant of difference if they’re taught to be tolerant. Education makes a huge difference in terms of what kids will or won’t accept. We saw it clearly in Sam’s school—when kids were taught simple lessons about letting everyone be who they are (Colors are for everyone! Boys can have long hair! Girls can have short hair! Like what you like, and let others like what they like!), they accepted Sam. When they weren’t explicitly taught, they rejected him. Education is powerful. It works.

In unsupportive environments, kids like Sam are teased, ostracized, and brutalized. We want to try to prevent these behaviors before they start by building a culture that tolerates, values, and celebrates difference. Our book is a small piece of a much larger effort to build a more empathetic, compassionate culture.

 

SSP: Is there anything you’d like to share specifically with those parents and families of transgender children?

First, find support—for both yourselves and your children. Join a support group of like-minded parents (or form one if you can’t find one); bring your child to a group for gender-nonconforming or trans kids. Enlist thoughtful, supportive family and friends to buoy and celebrate your child and your efforts to make their world safe. Read books about parenting gender-creative children, and fill your child’s library with books that reflect gender diversity (our website has a list of books for adults and kids of all ages—http://www.sarahandianhoffman.com/resources/recommended-reading/). Ask your school to be proactive about anti-bullying programs in general and gender education in particular (and if asking doesn’t work, demand it). Find organizations that support families and schools (our website has a list). The National Association of Independent Schools has a document, Guidelines for Independent Schools Working With and Supporting Transgender and Gender Nonconforming Students, which provides invaluable support for building acceptance in schools.

Educate everyone you can. Gender diversity is a new concept for most people; ignorance and prejudice are deeply ingrained. Even people who love your children—like grandparents—often need time to adjust. See each interaction as an opportunity to educate someone about the many forms of gender identity and expression.

Remember that your responsibility is to your child, not to manage the discomfort of adults. Walk away from judgment, and shield your child from it as best you can. And when you can’t shield them, teach them to manage it. Teach them the historical context for overcoming bias. When Sam was in kindergarten, we taught him about Rosa Parks and Harvey Milk—ordinary people who stood up to bias against them and changed the world. Tell your child the world will change. That it is changing. And that they are helping to change it, simply by being themselves.

Lastly: breathe. When you’re the parent of a kid who’s different, it’s easy to overthink everything you do, tempting to try to interpret the significance of everything your kid does, and appealing to try to predict the future. Our job is to accept our kids for who they are, and to protect them from harm. We can’t know who or what our children will evolve into as they grow up. We had no idea that one day Sam would put on khaki pants and cut his hair short (as he did at age 11) and be happy with that choice. We had no idea if he would grow up to be straight, gay, bi, gender-queer, trans, or his own special something—in fact, we still don’t. Sam, like all of us, is a work in progress. All we as parents can do is support our children unconditionally, and be open to who they become.

 

 

 

 

 

 

 

INTERVIEW WITH JILL WOOD, THE ULTIMATE SUPERMOM

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SSP: How did Jonah’s Just Begun come to be?

Jonah was born July 30th, 2008, happy and healthy. Jeremy and I couldn’t take our eyes off of our remarkable son.

At Jonah’s first-year well visit our astute pediatrician, Dr. Hai Cao, suggested we get Jonah an MRI. Dr. Cao noted that the size of Jonah’s head was “off the charts.” Nine months later, Jeremy and I received news that changed our lives a second time: Jonah had Sanfilippo Type C, a rare disease that is both fatal and incurable.

Love doesn’t falter for your child after a horrific diagnosis. If anything it grows stronger. From that point forward, we understood that every second with our son was precious. We no longer take any family time spent together for granted. http://jonahsjustbegun.org/

Jonah is 8 now and finishing up 2nd grade at ps10. He still has no idea that he’s sick and we plan to keep it that way.

SSP:  What exactly is Sanfilippo and how are children affected?

Sanfilippo Syndrome is caused by a defect in a single cell. It is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules called mucopolysaccharides or glycosaminoglycans (aka GAGs). Sanfilippo syndrome belongs to a group of diseases called mucopolysaccharidoses (MPS). Specifically, it is known as MPS III.

Sanfilippo Syndrome occurs when the enzymes the body needs to break down the Heparan Sulfate (HS) are absent or are defective. When HS is not broken down, the body does not release it. Instead, it is stored inside the lysosomes of every cell in the body.

To date there are four types of Sanfilippo syndrome. They are distinguished by the enzyme that is affected.

Sanfilippo Type A: heparan N-sulfatase. Estimated incident rate is 1 in 100,000 live births.

Sanfilippo Type B: alpha-N-acetylglucosaminidase. Estimated incident rate is 1 in 200,000 live births.

Sanfilippo Type C: acetyl-CoAlpha-glucosaminide acetyltransferase. Estimated incident rate is 1 in 1,400,000.

Sanfilippo Type D: N-acetylglucosamine 6-sulfatase. Estimated incident rate is 1 in 1,100,000.

Between the four types of Sanfilippo, the syndrome present in approximately 1 in 70,000 births.

SSP: What happens to a child with Sanfilippo Syndrome?

Sanfilippo is an insidious disease that often goes undetected for years. Most children are born with no visible signs that anything is wrong. It’s not until the preschool years that children start to show cognitive delays or course facial features; even then, the disease is often misdiagnosed.

Sanfilippo is progressive and can be broken down into stages.

First stage: The affected child will display delayed speech as well as mild facial abnormalities and behavioral issues. Some children will exhibit a large head, prominent forehead, bushy eyebrows, coarse hair, thick skin, short neck, full lips, low thick ears, a wide flat nose and full round bellies. Their facial features are described as “coarse.” Affected children are prone to sinus and ear infections, diarrhea, and tight Achilles tendons. Minor bone deformities are quite common.

Second stage: The affected child will become extremely active, restless, suffer sleeplessness and exhibit difficult or ‘quirky’ behavior.  Over time, speech and communication skills decline along with other cognitive and motor skills.

Third stage: The disease will take its ultimate toll. The child will lose the ability to walk, talk and eat on his own while his body shuts down. Depending on the phenotype of the disease, death can occur as early as three years or as late as 30 years old.

Currently there is no cure for Sanfilippo Syndrome. In most cases, treatment is limited to reducing or controlling the symptoms of this disorder by making sure that neurologists, ophthalmologists, cardiologists, ENTs, orthopediatricians, dentists and genetic counselors are consulted routinely.

SSP: How rare (or ultra-rare) is this disease and is there a treatment?

There currently is not a treatment for Sanfilippo Syndrome.  We do not know the exact incident rate of Sanfilippo type C. A few papers suggest 1 in 1.5 million births. By that measure there should be 4 babies born a year with Sanfilippo C. We only know of 20 cases in the U.S.

SSP:  What is the current research?

JJB along with our consortium: Helping Advance Neurodegenerative Disease Science (H.A.N.D.S.), made up of international medical research foundations, is struggling to keep the research funded. Our main research program is gene therapy, taking place in Manchester, UK. Since 2012, H.A.N.D.S. has collectively funded over $800,000 into this program. We are nearing clinical trial. We have one more pivotal study to complete before we can go to the Food and Drug Administration with our clinical trial protocol. Over the next two years H.A.N.D.S. plans to raise $500,000 to complete this study.

SSP: What is next/what can you share with us?

It has been a very exciting and progressive year for us. Our Natural History Study has finally been given approval by the National Institute of Health! If all goes as planned Jonah will be the first child to be enrolled in this study. Jonah and children like him will spend two days at Montiforie Childrens Hospital undergoing a battery of tests. From clinical tests to cognitive and behavioral exams, this data will help us gain a better understanding of the course of the disease.

The patient registry that JJB manages for all Sanfilippo subtypes has gained global exposure and the attention of pharmaceutical companies. This has helped us identify our global patient population, giving us a much better idea of incident rate and phenotype.

After clinical trial we will need investors to manufacture and commercialize our treatment. To help facilitate this partnership, we founded a virtual biotech, Phoenix Nest. The biotech puts us in a better position of attracting investors. http://www.phoenixnestbiotech.com/

The biotech also gives us the opportunity to apply for funding from the National Institute of Health. We have been very successful in winning these grants. The rub, these grants are for type B and D Jonah has type C. The NIH funding stipulates that the science happens in the United States. Our scientists working on type C live and work abroad. To get around this Phoenix Nest is in the process of licensing our gene therapy so that it belongs to a US based company. http://www.raredr.com/news/phoenix-nest-grant

SSP: What is needed NOW and how can we help support you?

We continue to raise funds to keep our research from slowing. With our ‘Heroes Among Us’ event on July 23rd we hope to raise the amount of $17,598.00 to pay for the production of our enzyme for our Sanfilippo type C gene therapy program.

For information on the event, please go to: Event Info

To make a donation, please go to: Donations

For more information on Jonah’s Just Begun organization, please go to: http://jonahsjustbegun.org/

Taima Lopez: Super Mom, Super Nurse, Super Human!

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written by Jen #supermom

Anyone who is a patient of South Slope Pediatrics is surely familiar with Taima Lopez, the most nurturing and kind nurse that greets us at our appointments.  Whether it be weighing our babies or administering those dreadful shots, she does it all with a smile while keeping our nerves at bay.  Her genuine compassionate nature and strong work ethic make her such an invaluable part of our practice.   Lets get to know her a bit more in this month’s interview!

SSP: We all know you as the most gentle and caring nurse at South Slope Pediatrics.  Can you share a little more about yourself and your family?

I am a nurse at South Slope Pediatrics. I consider myself to be a self-motivated and compassionate person. I have 3 kids: my oldest is 19, my second youngest is 13, and my baby is 19 months.

SSP: Can you tell us about your job and what you do?

My job here at SSP is to obtain and document vitals, do eye and hearing exams, and lead and hemoglobin tests on the children. I obtain basic patient information and transmit this information via an electronic medical record for the doctor to perform his medical assessments.

SSP: How long have you been at the practice?  What were you doing before coming to SSP?

I have been with South Slope Pediatrics since 2013.  Before coming to SSP I worked in a private school, training nursing students.

SSP: What led you into the medical field and why did you decide to become a nurse?

What led me to this field is that I enjoy helping people in need. This is my biggest satisfaction.

SSP: What interests you most about nursing?

What interests me most about nursing is how a simple act of kindness can make a change in someone’s day.  For example,  just holding a persons hand and letting them know it’s going to be OK.  Just being there for them makes a difference.

SSP: What is the most challenging part of your job?  Why?

The most challenging part of my job is vaccinating children. At the moment of injection it is painful for them.  They don’t why we are doing it and that it’s for their own benefit.

SSP: Do you have a special experience that has helped shape you as a nurse?

My special experience  that has helped me as a nurse is having kids of my own. I can relate to parents and their concerns.

SSP: You are always smiling.  You are full of positive energy and it helps each of our little ones (and us parents) when we have to come in for shots.   What’s the secret??? 🙂

My secret is that I enjoy and LOVE what I do and knowing it’s for a good cause. My positive attitude I thank God for.  My kids and my family are my inspiration, my strongest motivation to strive for continuous improvement. Also, working with Dr. Cao, Matteo, Dr. Wilson-Taylor and the whole South Slope Pediatrics team has been a very rewarding experience, one which has promoted professional growth.