Most of us that have raised small children in Park Slope are more than familiar with Hootenanny and the couple who runs the space, Kira Smith and Pete Sinjin. They are synonymous with all things music and art; inspiring babies, toddlers and small children all over Brooklyn to get up and sing, dance, create. Did you know however they’ve just recently opened up a new art space right around the corner from Hootenanny called the Art Annex? Learn more here in our interview with Kira Smith!
SSP: Prior to us all learning all about your new amazing art space for children, can you please tell me a little about yourself, Kira? I know you’re a musician, dancer...AND mom! How did you and your husband Pete start Hootenanny over 10 years ago (with a tiny baby to boot)?!
I’m so glad the word has spread about the Art Annex! Thanks for your continued support and kindness! So… 11 (plus) years ago I was pregnant with Tucker, our younger child, and in school for Creative Arts Therapy, and Pete was teaching Music Together all over Manhattan as well as in Brooklyn for Theresa Wozunk at the “Musical Bridge” on 15th Street. Theresa decided to move on and do theater production, and asked Pete and I if we would be interested in buying the business. We thought and thought about it and finally came to the conclusion that no, we should definitely not do that! We had never had ambitions to run a business, nor had we any skills or experience. I was about to finish my last internship and Pete really wanted to focus on making music, when he wasn’t busy teaching. Theresa (who we now call St. Theresa!) wouldn’t take no for an answer. She insisted it would be a great place for us to be creative and have a positive work life balance as parents of young children. Clearly, at that point, we listened to her, and the Hootenanny vision began. We decided if we were going to do this, we would build the place we wanted to spend our days… as artists, as parents… we wanted to create a joyful community gathering place focused around art and music. I will admit I cried through most of the back office set up, 8 months pregnant trying to learn excel and quickbooks and trying to build a website. That may sound ridiculous now, but for context, when I went to college I didn’t have a computer or an email address. The first session we took registration for Hootenanny classes we sent confirmations by MAIL! With stamps! Anyway, we just tried to make up for all of our shortcomings by focusing on the love and from day one the community gave it back tenfold.
SSP: You and Pete are infamous in the Park Slope community for Hootenanny, a pillar of awesomeness in terms of music classes, yoga, dance and everything else that you offer. What made you decide to expand and open up the Hootenanny Art Annex?
Thank you again for your extreme generosity. Just like Hootenanny, we didn’t go looking to expand and open up an Art Annex. It was all a very lucky synchrony. We are good friends with Amy who ran the Brooklyn Design Lab, and she reached out to us and let us know that after 10 years she was done and wanted to move on. At the same time our art program at Hootenanny had really been flourishing, because we had a fairly new teacher, Hannah Kasper Levinson, who was so inspired and inspiring to us and all of the families who took her classes. I knew that we were going to have a tough time keeping Hannah around with the limited amount of time we had to offer her classes, and we did not want to lose her. I got super excited by the vision of creating a little Hootenanny Art Space around the corner from Hoot, on 7th Ave. I had a meeting with Hannah and asked her if she would be interested in building the vision with me and being the lead teacher, and fortunately she said YES!
SSP: What would you say is the mission of your new art space?
For me the mission is so simple. Whenever I went to Hannah’s art classes at Hoot I was so impressed. Kids as young as 15 months, and as old as 7, and their grown ups were all so engaged, so full of curiosity and joy. The sense of exploration and freedom was palpable. The art being made was stunning. Hannah was always smiling. When families spoke to me on the phone or on the street about the art classes they were glowing and effusive. Over the last couple of years, when we were not always feeling so much joy about the world, there was something special going on in Hannah’s classes. The mission of the Art Annex is just that… More joy. More joy, more community, more art and hopefully by extension a little more love and peace in the world.
Hannah wrote our official mission statement which is more related directly to art and child development:
At the Hootenanny Art Annex we see the child as competent and capable and we believe that learning is social and collaborative. The art studio is a space where children come to create, explore, and experience themselves through art. With this belief in the capability of children we are helping them to become resilient, lifelong creative thinkers!
SSP: Can you tell us a little about the curriculum and the classes you offer?
Yes! We started with what we know best, kids 4 and under. The Toddler Art Play class that Hannah developed at Hoot previous to opening the annex is probably our greatest hit! It is a sensory-driven open-ended exploratory process art class for 15-month olds through 3 year olds. It introduces a vast array of art making materials and combines art, play and socialization.
Our classes for 2-4s become a little more specific with a focus such as Nature Art, Printmaking, full bodied Moving Art, or Self-portraits, and combine a seated project with open exploration.
We have afternoon classes for Pre-k and up such as Hannah’s Treasures and Collections, Creative Table, and Handmade from Scratch classes which explore intriguing mixed media materials, encourage imaginative play, and develop and support individual expression and creativity.
For 3rd through 8th graders we have classes with specialty teachers such as Textiles, Trade Secrets, Comics, and Observational Drawing where kids can really learn and deepen their skills to continue to express their own unique ideas as artists!
SSP: What do you think differentiates what you are doing here from other children’s art spaces?
I wouldn’t say I’m an expert on other children’s art spaces and I am sure they are all mostly fabulous.
We just really try to emphasize joy and open-ended creativity. Hannah and the other teachers have created such a rich and inspiring environment. Our shelves are filled with exciting materials and the space is open and inviting.
I like to think that what makes Hootenanny and the new Annex different from other places is the people involved! I’ve really searched for teachers who are vibrant and enthusiastic artists who are fully invested in the community. Like Pete and I, all of our art teachers have children, and are very aware of how precious these years are. I hope and believe that all of our teachers are warm and welcoming to every grown up and every child that walks in the door.
SSP: What does the future have in store for the Hootenanny Art Annex?
We are very excited about building grown-up art and craft workshops. I hope to have a calendar of craft nights for the New Year! We had our first one a couple of weeks ago and it was so much fun. One of our teachers Kim Correll, taught us a Japanese dyeing technique called Arashi Shibori. We got to hang out together, drink wine, dye scarves and t-shirts and bags, and we all went home with gorgeous things! We will be offering birthdays, of course!
We are also hoping to build our art classes for older kids. Kim teaches a textiles class for grades 3-6 and we have Comics and Observational Drawing options for kids through grade 8.
We also just participated in the Park Slope Windsor Terrace Artists Collective Open Studios and it was so thrilling to have Sean Qualls and Karen Giordano show their work at the Annex. We’d love to use the space as a gallery for local artists. And I also thought we could try develop a plan to offer local artists studio space in the evenings!
And…and… ha, we never have a shortage of ideas for Hootenanny, just a long list that competes with keeping what we are doing afloat, and of course, two teenagers and laundry!
SSP: Lastly - for me, personally, I have always felt a deeper connection to you guys and all that you do due to how involved you are with the community and bringing everyone together in support of issues we all hold dear (climate change, civil rights, etc). Are there any plans for an upcoming fundraising event or concerts?
We are getting ready to reboot our activist Monday coffee hour , which I think moving forward will be activist Happy Hour- probably 5-6:30 once or twice a month. It is a time when you can come by with your kids and write postcards or do other easy important things related to the current issues. We have everything set up and there will be someone there to hang with the kids while you do the work!
Pete and I are also in the very early stages of a collaborative creative project related to Climate Change. I don’t have details to share yet, but we are hoping to create something that inspires people to start really talking about this vital issue of our times and our children’s future. With honest talk we hope to orient ourselves away from the anxiety that makes this issue so paralyzing for so many of us, and move us towards being involved, pro-active and progressive.
Oh, and on that note I should also do a quick last plug for our Holiday Gift Making Week December 10-14. All week there are workshops for kids (15 months through grade 5) to make simple gifts for friends or family and 5$ from every registration will go to the IRC, the International Rescue Committee and their work with refugees.
We love helping bring attention to the tremendous variety of talent among our SSP families here in Brooklyn. One such talent is a SSP mother, Tegan Brozyna, who was recently highlighted in the Gowanus Open Studios event this past month. Her artwork incorporates a combination of textiles, painting and sculptural elements; collectively creating a very calming effect. It’s no surprise as her family has been working with textiles for generations, traced all the way back to her great grandmother!
SSP: Let’s start by sharing with our readers a little bit about your artwork, which is truly unique in regards to the combination of mediums and materials used. Can you tell us about these materials and your process?
Drawing from both my background in traditional landscape painting and my interest in weaving, my current body of work focuses on my relationship to my environment, specifically my neighborhood in Brooklyn. As part of this exploration, I collect artifacts in the form of objects, shapes and color palettes. Using this source material as inspiration, I then create woven paper collages that are suspended in loom-like structures.
Each piece relates directly to a specific location. The color palette is inspired by found objects, and the paper forms take their shape from rubbings of cracks and other physical markings in that same environment. Borrowing from the language of weaving, clusters of paper are then layered and suspended in space by the tension of threads.
SSP: Can you share a little about your background and upbringing and how these experiences inspired and affected your art?
My parents always encouraged my siblings and me to be creative and to pursue our artistic interests. From a young age my artistic training was traditional with an emphasis on drawing and painting from life, but a few years ago my practice started to feel stale. I wanted to move away from representational work toward abstraction, but didn’t know how to break into it.
I started to experiment with textiles, specifically sewing, weaving and embroidery. It felt like a natural fit because my mother’s family has a long tradition in textiles starting with my great grandmother who worked as a seamstress in England and going down to my mother who sews and crafts. Although I still consider myself a painter, incorporating textiles has reinvigorated my art.
SSP: How has being a mom changed your approach to your work? How do you balance being a mother and an artist?
At times it can be a challenge to balance being a parent with being an artist. More than anything, time often feels limited so I feel very lucky to have a supportive partner who can watch our daughter while I’m in the studio. When she was little, I often brought my daughter to the studio with me and made smaller work that was easier to complete in 1-2 sittings. Things got a little more challenging when she started crawling and then walking so I have to say that I wasn’t as productive as I’d like to be. I baby-proofed my studio to make sure that my daughter had some freedom to play and explore while I worked. It’s a little easier to focus and get work done now that our daughter is in school twice a week.
SSP: If your artwork said something, what would it tell us? Is there a deeper meaning behind the textiles, the color and the overall presentation?
For me, my work is meditative and calming; it helps me to make sense of my world, and to feel at home in both my surroundings and my own skin. My hope is that my audience also gets this feeling of peace and harmony, which I think is especially important right now.
SSP: Do you have one particular piece which you’ve created that has more significance to you, and why?
A few years ago I created a piece that was inspired by a quilt that my great grandmother made during the Depression that repurposed old clothes. It made me feel closer to her, and it also tied into my interest in sustainability and the environment.
SSP: I understand you’ve not only been fortunate enough to show your art in the US but also on global scale, including Italy and Iceland. Most recently you were a part of the Gowanus Open Studios this past month. Where can we see your work next and what does the future hold?
I’m currently in a four-person show called “A Fluid Tapestry” at Ground Floor Gallery on 5th Street here in Park Slope (just off of 5th Ave). The exhibition is up until November 13, and we’ll have an artist talk that night from 6:30-8pm.
We’re also expecting our second child in February so I plan on using the next few months in the studio to really dig into my practice and experiment with a new series of work.
To read more about Tegan Brozyna, please visit: www.teganmbrozyna.com
Halloween is a chance for us parents to reconnect with those childhood memories...encouraging imagination, creative play...telling “spooky” stories and in Brooklyn, attending the most fun parades, festivals and all things dress-up! Join DJ Questlove at Brooklyn Bowl for a jamming kids dance party, attend a haunted walk through Prospect Park or for all you pup lovers out there, there’s even a dog costume parade at Luna Park.
October 31st (starting at 14th St and 7th Ave in Park Slope): It’s the annual Park Slope Halloween Parade!!! This child-friendly parade will head north on 7th Ave, turning left on 3rd St and then will ultimately end at JJ Byrne Playground. The festivities begin at 6:30. Be sure to keep a look out for Dr. Cao, Matteo, and their daughter Isabella!
October 14th at Luna Park, Coney Island: Get your dogs ready in the most creative costumes for Luna Park’s annual Dog Parade & Costume Contest. They will have a chance to win awards for categories like cutest, mister/miss congeniality, and for originality. Pre Register your dog ( It’s FREE!)
Saturday, October 20th at Pier 6 Lawns, Brooklyn Bridge Park: Each October, we celebrate the changing of the seasons with Harvest Festival. This year they will kick off the festival with a parade led by a brass band! Throughout the the festival you’ll find fun for the whole family with face painting, spin art, live animal demonstrations, pumpkin decorating, family-friendly square dance activities, story time, badminton, spike ball, and more. Local organizations including City Growers, The Honeybee Conservancy, and Genspace will host harvest-themed interactive and educational activity stations. Food will also be available from Fornino and Ample Hills.
Saturday, October 27th at Albee Square Farmers Market (corner of Fulton & Bond): Come and haunt Albee Square for some spooky fun, balloon ghouls, monster tunes, a photo booth, paintable pumpkin patch, and more. 1:00pm to 5:00pm. Free!
October 27th at Nethermead in Prospect Park: The 39th Annual Halloween Haunted Walk and Fair brings thousands of kids and families for free, ghastly fun to Prospect Park. Encounter zombies, werewolves, witches and other Halloween spirits on a haunted walk through the woodland Lookout Hill, ideal for families with children ages 7-12. All ages can enjoy a festive Halloween Fair on the Nethermead, featuring family-friendly activities, as well as sweet and savory treats from some of the city’s top food trucks. 12pm- 3pm. The festivities continue at BKLYN BOO!, the official after party, taking place at City Point in downtown Brooklyn!
October 28th at Industry City: March in the kids Halloween parade! The parade begins at 10am at Liberty View, and marches down Second Ave to Industry City for family activities, candy, and a concert by Rock and Roll Playhouse. There’s even a Captain America meet and greet!!! 12pm-2pm.
Weekends through October 28th at Prospect Park Zoo: Don't miss this annual Halloween event at Prospect Park Zoo. This year you’ll be learning about bats from around. Every weekend will be jam-packed with fun activities such as a Costumed Character Scavenger Hunt, face painting, and other Halloween-themed games and crafts. Plus, plenty of animals to visit.
Sunday, October 28th at Brooklyn Bowl in Williamsburg: Come and boogie down with your kids to the sounds of DJ Questlove (frontman of The Roots) at the always fun Brooklyn Bowl. Arrive an hour early and jam out to Black Tie Brass, a NYC jazz/funk band playing a set of Michael Jackson! Black Tie Brass 11:30am-12:30pm; DJ Questlove 12:30pm-5:30pm.
October 28th at Brooklyn Botanical Gardens: Stilt Dancing Insanity, Caterpillar Feedings, Rutabaga Skee-ball and Brooklyn’s Wackiest Costume Parade! Noon–5:30 p.m. Kids under 12 free! Gates open at 10 a.m. Last admission at 5:30 p.m.
Weekends Through October 28th (weekends only) at Luna Park: From 12pm-6pm, head to Coney Island for some Halloween fun! Little ones can get their faces painted, go on a mini-tractor race, dance on the monster mash stage...and no need to head to a farm to find your Jack O’Lantern—the park will have a pumpkin patch onsite. Head to Luna Park's website for more event information as its announced! All ages.
Did you know that up to 40% of the homeless youth in this country identify as LGBTQ? Many of these children are homeless because their parents have rejected them merely based on their sexual orientation. Homeless youth are at a greater risk of violence, sexual assault and exploitation. One organization’s mission is to protect these children from harm and help empower them to live independently, and that organization is the Ali Forney Center. Alexander Roque, a SSP dad, is their Director of Development and oversees all of their donor programs. Please read and share this with your friends. We all need to think about how we can help this incredibly important organization and the innocent children they support.
SSP: Can you please tell us about the organization you work for, the Ali Forney Center? What is your mission?
AFC is the nation's largest and most comprehensive provider of services and housing for homeless lesbian, gay, bisexual, and transgender young people. Our mission is to protect homeless LGBTQ youth from the harms of homelessness while providing them with the tools they need to rebuild their lives. LGBTQ youth are eight times more likely to experience homelessness than non LGBT youth. Once homeless, these young people are eight times more likely to experience violence, substance abuse, HIV infection and tragically suicidal ideation. In NYC there are an estimated 4,000 homeless young people on our streets. AFC provides care for nearly half who identify as LGBTQ. Family rejection is the leading cause of LGBTQ youth homelessness.
Please watch this moving video of Alex presenting an award to Lady Gaga and Lady Gaga’s mother, Cynthia, who Alex says “shared kindness and love with our kids in only a way a parent can”.
SSP: Why is this cause so important to you, personally?
As a parent, I struggle with comprehending how families reject their children for any reason but more so I cannot understand how a parent can reject a child because of their LGBTQ identity. Having experienced family rejection because of my identity I am particularly empathetic to the young people we provide care for. Above all, the issue of youth homelessness is one we should all be concerned with. Homeless populations, particularly homeless youth, need our support and care beyond a donation of cash.
SSP: Can you please share a little more about how that very personal experience led you to where you are now?
Generally, my childhood and what I was exposed to led me to a career of caring for others, and more specifically working to improve the lives of young people - prior to joining the Ali Forney Center I worked for a national organization that dealt with a neurodegenerative brain disease - Huntington's Disease. And, before that I worked for a program of the 11th Judicial Circuit Court providing care for children who were abused abandoned or neglected by their parents.
Specifically, I grew up in Miami, Florida as a first generation Cuban-American immigrant. Both my parents were religious and expressed their homophobia and transphobia very openly at home - in fact, family rejection rooted in religious beliefs is the leading cause of LGBTQ youth homelessness - about 90% of the homeless LGBTQ youth population identify religious believes of their parents as the reason for their homelessness. My father in particular threatened me with abandonment (kicking me out of my home) if I were gay. When he suspected that I was gay he sent me to a therapist for psychiatric care - as a result I grew up rejecting my identity and in fear of family rejection.
SSP: Did you always know you wanted to help gay youth?
Having moved out at a very young age and building my own community of support and acceptance, I sought refuge and empowerment in helping others - primarily young people - be it LGBTQ or not. I always knew that my upbringing was not normal nor was it one I deserved, as such my work circles largely around helping youth who are underprivileged, underserved, or otherwise disenfranchised from acceptance, and love.
SSP: What programs do you offer at your center for the LGBTQ youth? I understand you also offer shelter?
In addition to providing shelter and housing services, AFC offers a continuum of services specifically designed to help these young people thrive and overcome the trauma of family rejection and the harms of street homelessness. This includes medical and mental healthcare through our onsite medical clinic, substance abuse treatment, career and educational support in a classroom environment, support group services, leadership development, advocacy training, peer led services, and other vital care. We also do a lot of work around sex trafficking and sex work. In the US more than half of homeless youth are propositioned for sex within 72 hours of being homeless-- typically sex in exchange for food, shelter, or money. Nearly 87% of the young people who come to us indicate they have engaged in commercial sex to survive.
In total, we connect with over 1,700 young people annually who are forced into homelessness. Nearly 50% of our clients come to us from New York, 45% come to us from across the country -- mostly the south, and 5 % come to us from outside of the US.
SSP: Can you tell us a little about Project Birthday?
Project Birthday is a program I launched when I worked with children in the dependency system -- these are young people who were abused, abandoned and/or neglected by their parents. I learned that children in the court system did not celebrate their birthday, and worked with a board member on developing funding that would allow us to celebrate birthdays. When I joined AFC in 2011 I knew I wanted to introduce this program but I wasn't able to amass the funding necessary to make it possible. Earlier this year, I was fortunate to work with a donor and board member on introducing the program. Each month, we host an agency-wide celebration where we celebrate all birthdays that month. Each young person who has a birthday that month receives a birthday card, a gift card to Target, a certificate for a cupcake at Sprinkles, and a birthday celebration with other friends celebrating their birthday. Above and beyond the gift and the time we spend celebrating the birthday, we are able to celebrate this young person's life. We are able to remind them that they are valued, important to us, and loved.
SSP: What has been the most meaningful and impactful experience you’ve had while working the Ali Forney Center?
For me the greatest impact and most meaningful part of my work has been the thousands of people that I have connected to our work over the years. Telling our story, educating others about the realities of our homeless young people, and engaging the community in this work is particularly meaningful because our young people need us - not just for funding - but to remind them that even though their parents/families have rejected them they are valued, and celebrated just as they are. Connecting our community to our work demonstrates for them that they can build new families and new lives, and even though their family rejection may be painful, there is a family waiting for them.
SSP: Funding must be more important now than ever, as I understand certain federal grants are ending this year. How can we get involved, can we volunteer? And how does one donate?
Volunteering, telling our story, liking us on FB and sharing our posts are all ways you can help us. Attached are group volunteer opportunities but there are also individual volunteer opportunities. I personally volunteer once a month in Sunset Park and once a month in Harlem. There are over 18 sites where individuals can volunteer. Donations can be made online on our website at www.aliforneycenter.org or on our Facebook page.
Jill Wood is a very dear friend, patient & Park Slope neighbor. Her story is about her brave and relentless fight to save her son's life. When Jonah was just shy of 2 years old he was diagnosed with a fatal genetic disease that is so ultra-rare that there are only 20 cases known in the US. After the diagnosis, Jill took immediate action and started a foundation in his name, Jonah's Just Begun, to help create awareness and advance the science. Jill needs our help now more than ever as she perseveres to find a cure before it is too late for her son and the other children and families suffering from it. Want to make a difference today? Buy tickets for your family to attend her upcoming Halloween themed fundraiser October 28th, right here in Park Slope!
SSP: Before we learn more about your son’s rare disease and your organization, can you please tell us about your upcoming Halloween fundraiser and why we all need to attend?
The Little Gingerbread House of Horrors is a Halloween themed fundraiser. This year’s theme comes from Hansel and Gretel meets Candyland. The event will take place October 28th from 12-2pm at Shapeshifters Lab in Brooklyn NY. There will be lots of activities for the kids: crafts, face painting, food, music and dancing. Come dressed and hopefully win a prize for best costume. Parents give your kids a fun and wholesome time, while you peruse our awesome raffle baskets. Enjoy a cocktail with friends, you can even dance if you want to. Don’t be scared - there is fun for everyone at the Gingerbread House of Horrors.
A huge thanks to our sponsors: South Slope Pediatrics and The Park Slope Day Camp!
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. He was our first child and his birth changed our lives. Jeremy remarked to his father that it felt like his heart had doubled in size, making room to hold all the love he felt for Jonah.
We were living in bliss with our little boy, dreaming of the years to come and all of the wonderful experiences that we would have together as a family.
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, Our geneticist gave Jeremy and I the news that changed our lives a second time: Jonah had Sanfilippo Syndrome Type C, a rare genetic disease that is both fatal and untreatable.
When I asked our geneticist if this meant a death sentence for Jonah. She paused for a very long time, my heart sank. She came back and said: “Today there are treatments thought impossible just five years ago.”
That is exactly what we needed to hear to give us the strength to fight Jonah’s fate.
Do to the rarity of Jonah’s syndrome there was not a single research program happening at the time of Jonah’s diagnosis. My husband and I found this unacceptable. Jeremy and I reached out to every resource that we had, forming Jonah’s Just Begun-Foundation to Cure Sanfilippo Inc. We started fundraising and searching for scientists that would help us.
SSP: What exactly is Sanfilippo and how are children affected?
Sanfilippo Syndrome is a genetic disorder. My husband and I are both carriers of the defective gene that causes Sanfilippo Syndrome. We both passed our defected gene to Jonah. There isn’t newborn screening for Sanfilippo Syndrome and there was no way of knowing that we were carriers. Because of this defective gene, Jonah’s body is unable to produce an enzyme, this enzyme’s job is to breakdown and recycle a molecule called Hepran Sulfate (HS). Because of this defect, HS is left to clog every single cell in the body.
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; even then, the disease is often misdiagnosed. It is most commonly misdiagnosed as Autism.
Sanfilippo is progressive and can be broken down into stages. Some describe Sanfilippo as a childhood Alzheimer’s.
First stage: The affected child presents with: delayed speech, hyperactivity, impulsivity and behavioral issues. Sanfilippo children have distinctive facial features, you must be trained to notice them: prominent forehead, bushy eyebrows, coarse hair, thick skin, short neck, full lips, low thick ears, a wide flat nose. Their facial features are described as “coarse.” Affected children are prone to sinus and ear infections, diarrhea, and minor muscular skeletal issues. The problems associated with Sanfilippo are vast and varied.
Second stage: The affected child will become extremely active, restless, suffer sleeplessness and exhibit difficult behavior. Many children are compelled to chew on things, grab at people or items. Some children have seizures others have visual and hearing problems. 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. Death may occur as early as the age of five. More common, however, are children that live into their early teens, with some surviving into their twenties.
SSP: How rare (or ultra-rare) is this disease and is there a treatment?
A rare disease is defined as having a patient population of 200,000 or less. Jonah’s version of Sanfilippo only has 20 known patients in the United States, the current known incident rate is 1 in 1.5 million. Sanfilippo Syndrome is considered ultra-rare.
SSP: What is the current research?
JJB along with our consortium: H.A.N.D.S. made up of international medical research foundations like JJB have funded over a million dollars towards a treatment. Our gene therapy program is ready to go to trial. The only thing stopping us is funding for the vector production for a human clinical trial.
A handful of Mom and Pop foundations have funded a treatment that once had no hope all the way to the point of clinical trial. We could have never gotten this far without the generosity of others. Now we need a financial partner to help with manufacturing of the drug and the finances of a clinical trial.
SSP: What is next/what can you share with us?
There is still a lot of work to be done. We need to complete our Natural History Study (NHS) a NHS follows the progression of a disease by collecting medical data from the patients that suffer from the disease. Our Natural History for Sanfilippo type C and D is being conducted at the Montefiore Children’s Hospital under the direction of Dr. Paul Levy. 20 patients will come to NY for two days of testing, one day will be spent at Montefiore where the children will undergo a battery of tests, involving bloodwork, MRI, E-Xrays, Ultrasound etc.
The second day the children will participate in cognitive testing at the Albert Einstein Medical Center under the direction of Dr. Sophie Molhom. Dr. Molhom’s testing is not covered by insurance, each day of testing for each child is $1,000. That’s $20,000 a year, this study will happen for five years. This study is vitally important as the data will provide proof to the FDA that our gene therapy is working.
SSP: What is needed NOW and how can we help support you?
We need to raise funding to cover the cognitive portion of the NHS that is not covered by insurance. $1,000 per child per year.
One way you can help support is to come to our upcoming fundraiser: “The Little Gingerbread House of Horrors” You can purchase tickets http://bit.ly/GingerbreadHouseofHorror
If you can’t make it to the event you can help by supporting our raffle and auction tables.
Purchase an item from our amazon gift list and it will be re-gifted into themed baskets for raffle prizes. https://smile.amazon.com/hz/wishlist/dl/invite/46wCYyd
Lastly, we can always use volunteers to help set up and take-down the day of the event. The set design for our life-sized gingerbread house event will take a lot of manpower to construct.
Dr. Sanjay Gupta on CNN interviewing Johnny Lee Miller:
Now more than ever, human interaction seems to be missing from our lives. Most of us are guilty of ordering almost everything online. We tend to lack that human connection in our day to day purchases. One local small business, Accurate Pharmacy (5th Ave and corner of 18th St), is bringing that connection back in a meaningful way in this age of mobile interaction and automated calls. Let’s get to know Danny Tsang, the owner and person who will greet you at the door every day and very likely remember you by name!
SSP: Before we dive into what makes your local small business so special to the South Slope community, can you please tell us a little about yourself and how your life led to the opening of Accurate Pharmacy?
I was born and raised in Brooklyn and recently moved into Park Slope. I’m a father to two beautiful daughters (ages 4 and 6), and husband to Sarah - a lifelong friend, business partner, and professional colleague. Sarah is a Pediatric Pharmacist and works at New York Presbyterian - Weill Cornell Medical Center and just celebrated her 15 year anniversary there (which includes her intern years).
While working at corporate pharmacies, I’ve decided that I wanted to spend more time with patients and foster a trusting relationship. Therefore, I developed a business plan that carried us to our upcoming fourth year in business and hopefully many more. I believe that pharmacies should not be driven by metrics and quotas, but simply by the number of families that it has touched upon and made a positive outcome.
We strongly believe and advocate that the pharmacy’s role in healthcare is integral in patients’ well being (a visit to the pharmacy is usually the patients’ last stop before they go home “to the road of recovery”; therefore, taking time and counseling each patient, and arming them with proper knowledge specifically regarding the medication (or regimen) will ensure compliance and reduce risk of unwanted adverse effects). We can also assist and collaborate with patients’ healthcare provider to reduce adverse events and increase compliance.
SSP: When did you open the store, and what was your goal when you opened it?
The pharmacy grand-opened September 14, 2014. The main goal is PATIENT CARE. In the world of healthcare as pharmacist, we have the unique opportunity to improve outcomes, lower costs, and raise the quality of life for patients; after all, we are the last person or location patients will visit before going home to rest and recover.
Another goal is to break the cycles of any bad associations patients have with pharmacies. This includes remaining transparent with patients, working with patients, doctors, and pharmacy insurances to come up with a mutually agreed treatment plan, reducing wait time, and providing thoughtful personal services.
SSP: Local Park Slope residents have shown great appreciation for you and your pharmacy. One such positive review says “Danny is the best pharmacist I've ever known! He takes his time to answer any questions, has helped me to understand my insurance and goes above and beyond for all of his customers. I always thought local pharmacy=more expensive but that is definitely not the case. I will never go to a chain pharmacy again! I had a friend go pick up some medicine with me and after experiencing the wonderful customer service, they now walk a mile past their pharmacy just to go to Accurate. I really can't say enough great things” (Yelp). How do you think you deliver such positive experiences to your customers?
Dedication and hard work. Sarah and I have worked each and every day the pharmacy is open since grand opening. We have made a commitment to get to know the neighbors for us to understand how we can position ourselves to help and be useful in the community.
SSP: Folks love the personal attention they receive when they enter your store. You even take the time to greet customers by name. Why is this so important to you, creating these personal connections?
Sarah and I believe it is important to create an emotional connection via patient/customer engagement. Greeting customers and patients as they enter the pharmacy triggers positive conversations. A warm and sincere greeting serves as a tool to help connect people at a more personal level and may even reduce the imaginary “defensive walls” to create a comfortable environment. This will then foster a open patient/customer and pharmacist relationship where it is more likely for questions to be asked and counseling is seeked.
SSP: One local Park Slope mom has told me that she had complained about a prescription she received and you took the time to call the distributor to get a better product for her - truly going above and beyond for your customers. If a customer has questions about a medication, you will call or text them answers. Can you please tell us more about how you deliver such outstanding customer service?
I’m glad we can reference an example where a patient complained about a specific prescription. We listen and put ourselves into the patients’ shoes. Listening is one of the many important skills in customer service. As a small business owner, we may not always have the ability or resources to solve every customer’s problems, but we can always offer them our 100% attention, by listening, and then respond appropriately and thoughtfully. In certain cases, it can also turn a negative experience into a positive one. In this example, we made a call to the manufacturer of the patient’s medication and made them aware that there was a complaint. This allows the manufacturer to collect data and hopefully improve and reduce similar incidences. We are then able to work with our distributors and get a similar product to replace the damaged medication. It all seems like a simple interaction, but if the patient did not inform us about the issue, and decided not to take the medication, then this might have led to an undesirable medication non-compliance issue. It is crucial to us, for my patients, to understand how to use/take their medications comfortably so they can achieve a better outcome.
Listening to customer feedbacks also help us improve. I remember when we started, our shelves were bare and stocked with items that our neighbors weren’t looking for; by listening to our patients’ and neighbors comments, we have transitioned ourselves to their daily stop - carrying as many essentials items and medications that our small location can fit.
SSP: Our South Slope Pediatrics family would surely like to know more about your offering at the store. I understand you sell things like Honest diapers and Melissa and Doug toys! Can you please tell us more about your offering, to young parents in particular? Are there other services that are unique to your store, which we should know about?
We offer all the same standard services as most pharmacies, but I am also a Kings County Notary Public and approved NYS Department of Motor Vehicle vision test center. The pharmacy is also a UPS Access Point which for the neighbors’ convenience, may drop off packages here. We also have a photo processing lab located directly behind the pharmacy (side entrance). Services in the photo department includes passport photo, photo touch ups, film processing, etc.
SSP: Is there anything else you’d like to share with our parents about your store?
We also dispense prescription medication and compound individualized medications for pets (offering the best available prices). For example, if your cat loves their medication chicken flavored - we can help!
Another summer is winding down, and our focus is now on the start of the school year. This can be accompanied by some anxieties (for both you AND your child). So how can we best prepare our children for the upcoming year? Here are 10 tips that will help us through the adjustment of a fun, playful summer to a more regimented school schedule.
Photo courtesy of Baciccia
There is surely no shortage of restaurants in and around Park Slope. But which are the best choices when we go out with our babies and children? We’ve spoken to several parents in the neighborhood and have rounded up some of the favorite family spots. FUN FACT: Did you know Dr. Cao is totally obsessed with Italian food? His top 3 restaurants are featured at the top, with his family’s favorite menu choices!
#1) Baciccia - True Italian cuisine (everyone there is from Italy). They have Nutella Pizza (YES, it’s a thing - and Hai learned this from Matteo’s nephews back in Italy)!
#2) Piccante - AMAZING Italian (not in Park Slope but close enough in Bay Ridge). Osso Buco is to die for but definitely come hungry...it’s huge! A real gem of a restaurant and very accomodating for children.
#3) Piccoli - Bolognese della Nonna is Hai’s daughter’s favorite dish. They start preparing it as soon as she walks in, they don’t even ask what she’s having! Mouth watering homemade risottos, and more simple pasta dishes for the littles make it a win-win for the whole family.
Photo courtesy of Piccante
Bogota -If you’re looking for a more lively spot, this restaurant will deliver a more fun experience and great Central/South American food. Children’s menu and fried yucca, cornmeal cakes (arepas), black bean empanadas...lots for them to choose from. Definitely go early if going for dinner as it gets very crowded!
Brooklyn Crab - Mini golf, bean bag toss, sandbox….and plenty of room for kids to run around and play outside while you enjoy the seafood in this crab-shack vibe in Red Hook. A perfect way to spend a Saturday or Sunday afternoon with the family!
Cafe Steinhof - Casual Austrian restaurant, where kids can enjoy some schnitzel or spaetzle. Great choice for a brunch and high chairs are available. It’s a little tight indoors for strollers, FYI (easier to sit outside)!
Calexico - Sometimes it is hard to get a seat, but when you do it's worth the wait at this restaurant with a “cool, California vibe” (NY Mag). Affordable, and fun - can’t really go wrong here, kids menu and all! Folks love their burrito bowls with the “crack sauce” (spicy mayo).
Dizzy’s - A “finer diner”, a PERFECT brunch spot for the family and it really doesn’t get any more baby or kid friendly than this. Food is always solid, and the staff could not be any friendlier!
East Wind Snack Shop - This spot in Windsor Terrace has the yummiest Chinese dumplings, and kids will often agree. Large communal table inside and bench outside, and the website even states “we love kids and dogs”!
Guiseppinas - Many think this is the best brick oven pizza in the Slope, true NYC pizza. The owner often comes by each table to greet guests. You can see the brick oven from your table and can watch them make your pizza.
Greenwood Park - This open picnic table setting outdoors is a fun spot for kids (during daytime hours only). Be sure to keep track of their holiday events, like pumpkin carving in October and the tree lighting in December.
Haab - A large menu includes more traditional tacos to tacos with duck confit, or cactus with avocado and queso fresco. Accommodating wait staff, definitely appropriate for babies and children.
Hugo & Sons - Super family friend restaurant, where children’s menu includes organic chicken nuggets, hot dogs and fries and rigatoni. They’ll even prepare any pizza or pasta as gluten-free if requested! Crispy artichokes...yum.
J'eatjet - If you or your kids love burgers, this gastropub is for you (beef, lamb, veggie, and more)! Not sure there are many kids (or adults) who would turn down their mac-and-cheese balls. Their backyard is lovely for the summer.
Johnny Mack's - For more traditional American comfort food, and you can play pinball while you wait. This restaurant has been there for 23 years, which says a lot.
Korzo - A Slovakian restaurant where kids are always welcome and can help you eat the yummy pierogies, potato latkes, and the infamous “fried burger”.
Krupa Grocery - The food here is delicious, specifically the panko-crusted shrimp burger and the Korean pickles. High chairs available, even “higher high chairs” for the high tables! Beautiful outdoor area is a great spot to enjoy brunch too.
Le French Tart - For lighter lunches and dinners, like quiches, crepes and salads, this new cafe is the place to go. The owners have young kids who are often there behind the counter. They also have an amazing selection of baked goods (and everyone must try their chips)!
Le Paddock - In addition to classic French food at a good price, this restaurant also offers brick oven pizza which always seems to work for kids! It's a smart option if you are in the park and want to go closeby for brunch or dinner (located in Windsor Terrace).
Miriam - Another great brunch spot, this Israeli restaurant is a pleaser for both kids and parents alike. Includes more simple foods (french toast) and then a more traditional Israeli dish like the Burekas, a puffed pastry pocket stuffed with feta & olives.
Patsys - If you find yourself in northern Park Slope, this old-school pizzeria has a big back patio. Thin crust pizza is amazing. They also offer to do kids’ parties, where they learn to make their own pizza!
Pita & Sticks - Good Greek food option and family-owned and therefore very welcoming of families. Large platters are fun to share with the kids! For the more picky eaters, the menu include burgers and chicken nuggets and the unisex bathroom has a changing station for babies.
Prospect Bar & Grill - The French Toast is a favorite with little ones, and it has ample space should they get antsy and want to walk around! The staff is so accommodating and friendly, an easy choice for brunch on a Sunday morning.
Sidecar - Buttermilk fried chicken. The best. That is all. And yes, kid friendly and a charming little outdoor space.
Ten - While many young children might not be so adventurous to try sushi, there are more “kid friendly” options like gyoza and edamame. Lots of vegan options as well!
Don’t see your favorite restaurant listed? Please comment and share!
Today it is more important than ever to celebrate and create dialogue around our diversity. One woman, a SSP parent and renowned artist, is doing just that through her 80+ murals around the world, her children’s books and teaching. Meet Katie Yamasaki, whose work has been given high praise by the NYT among many other publications. She has just published her 4th book, “When the Cousins Came”, which she has both authored and illustrated. Let’s meet Katie, learn about her latest children’s book and the significance of her work.
SSP: Before we dive into who you are and how you got to this incredible place you are at, can you please tell us about your recent book launch earlier this month of “When the Cousins Came”? One review summarizes it as “A refreshing, reassuring, and honest story about family and friendship that stands out amid a sea of pat friendship stories” (Anna Haase Krueger, Ramsey County Library, MN). How would you describe this book and what it means to you?
This book was inspired by my own family, by the times shared with my cousins from our earliest days. There are a lot of us, I’m one of 27 first cousins, and we were spread across the country in both very urban and very rural areas. I had cousins who rode skateboards in Albuquerque and cousins who rode dog sleds through the Alaskan tundra. So when we would get together, there was always a lot to share and a lot to learn.
We were also comprised of many different racial and ethnic mixes, which only continues to grow in this new generation. At any given family reunion these days, you’ll find our family to be different mixes of Chinese, Indian, Dominican, Japanese, Irish, Hawaiian, Nigerian, French-Canadian, Ethiopian, etc. The lesson that we took from growing up in that environment, is the lesson that I hope to communicate in the book. It is that our differences actually bring us closer together and make our relationships stronger and healthier.
SSP: You are tremendously gifted across many different fields. A muralist, an educator, a writer, an illustrator...I’m not sure where to begin! How did your childhood help shape the path to where you are now? How did you discover your passion for art?
I am lucky to come from a very creative family who encouraged all of us to make things all the time. I didn’t grow up thinking I’d become an artist, but I did grow up building, baking, painting, woodworking and sewing. My family was full of artists and teachers on both sides and I grew up thinking I’d probably become a social worker because I loved working with people and wanted to do something meaningful with my time. When I got to college, I ended up liking my drawing class (I was awful but it was fun) much more than my social work class, so that was the path I pursued. The tricky part was trying to figure out what I’d do with the art in terms of work, making a living, doing something meaningful, etc . . . I was lucky to find children’s books and muralism in the years that followed.
SSP: Who would you say are your biggest influences?
My biggest influences are people I meet who share their stories. I’m lucky that my way of making work focuses on storytelling- either in book form or in mural form. The stories are usually the stories of others, and the art is kind of the vehicle or the platform for expression. So I get to hear all kinds of stories- stories of immigration, of incarceration, of community, of family, of loss, of visions for better futures. These stories are my greatest influences and motivate my work completely.
Artistically, there are some artists whose work I love with my whole heart. Leo and Diane Dillon, Frida Kahlo, Ed Young, Kerry James Marshall, Diego Rivera and Isamu Noguchi to name a few.
SSP: So many of us, especially in the NY area, can identify with being part of a diverse family (including myself)! We can totally relate to the curiosity and excitement that comes with learning about our family’s different cultures and celebrating our differences. This seems to be an underlying theme in your books and murals that you’ve created. What is the most important message or messages you would like us to take away from your work?
I think that across both the books and murals, I hope that people will feel empowered to share their own story in any form. Everyone has a story and we sometimes get so used to our own story that it starts to feel less interesting or unimportant. Or maybe we are around too many people who have similar-seeming stories. But they all matter and they will matter to your children and to their children. So, I hope that the work will motivate the viewer to ask questions from their elders to learn more about the stories of their people. We are in a time where the power of listening cannot be underestimated. I hope that my work will motivate people to ask questions and listen thoughtfully as a way to deepen and broaden our connections.
SSP: To date, is there a piece of work that has been most meaningful to you, and why?
I am most proud of the work I have done in different prisons and detention centers both nationally and in Mexico. A few years ago, I did a project with incarcerated mothers at Rikers Island and their children in Brooklyn and East Harlem. I worked with the kids to design a message and a mural for their moms and then painted that mural with the moms at the women’s jail on Rikers. Then I worked with the moms to design a message and an image for their children, and painted the image with the kids in E. Harlem. It was a powerful project for many reasons, but it really showed me the power art-making has when it comes to building bridges. Not only were the moms and kids brought into dialogue with each other and able to communicate in a new and expressive way, but the moms were also brought into greater dialogue with the people around them in jail- other women, corrections officers, etc. The kids, in doing a public piece of art were also brought into the light in a way that lifted the stigma that burdens many children with incarcerated parents. The ways that the communities around both the moms and kids supported the expression of their story was incredibly moving and a project I will never forget.
SSP: I understand you also visit schools and organizations, can you please tell me a little more about that and how someone can get in touch with you?
I love to do presentations and workshops with both my book and mural work for people of all ages and moments of life. I’ve presented in elementary schools, homeless shelters, churches, prisons, museums, 4-H clubs, etc. Anything goes. I can be reached by email at: firstname.lastname@example.org
OK, it’s officially HOT out there! It’s a mix of emotions for many of us parents. Those of us who love the heat are enjoying it but if our child is not near water we’re bombarded with whining and constant complaining. Not to blame them completely - it does get crazy hot in the city! But they are obviously not the best at concealing any type of discomfort. The solution: playgrounds and parks with water features!!! Let’s explore some of the ones local to Brooklyn and in surrounding areas.
Splash Pad at the LeFrak Center at Lakeside (Prospect Park): Over 20 water jets pumping at once while you groove to fun pop music. Another bonus to the splash pad is that there is a great cafe on site to replenish all the energy you burned chasing your little one around in the water. The Bluestone Cafe has very decent food and picnic benches to enjoy it on. Stuffed Avocado salad, Mediterranean tuna wraps and chicken tenders are a few of the popular menu options. Cannot think of a better way to cool off and have fun on a hot summer day! GMAP
Third St Playground (Prospect Park - Prospect Park W and 3rd St): Almost a hidden gem, this playground is located off 3rd Street and Prospect Park West. Less chaotic than Harmony and offering more shade, this bench-lined circle has several play structures, tire swings, a circle sandbox and water features. This playground is a preferred spot for playdates, as parents can hang out on a bench and easily watch their children (while having adult conversation – imagine that)! Kids can run through a huge red coil water feature to cool off, or chill out in the sandbox. Bathrooms are nearby at the Picnic House. GMAP
J.J. Byrne Playground (5th Avenue between 3rd and 4th St): I like the fact that it’s segmented into different play areas for different age groups, including a gated toddler area. Slides and swings galore, standing farm animals for kids to climb on, and the spinning chairs that go way too fast. Best feature of this park is surely the water play, from sprinklers and water pump to shoot and spray water cannons! Enjoy the shady benches, and the best part...you can enjoy a gelato right across the street! GMAP
Pier 6 Water Lab (Brooklyn Heights): Cool off in the park’s most popular playground, which features a water-jet field that will keep children entertained for hours.It’s a two-level play area situated on a small hill, with a river of water winding down from the top level to the bottom. There are sprinklers, pumps, small pools to stand and stomp in, and a waterwheel that kids can turn themselves. You can spend hours here, and when you’re done, hit the nearby Sandbox Village, Slide Mountain, or Swing Valley. GMAP
Underhill Playground (Prospect Heights, Underhill Avenue between Park Place and Prospect Place): Kids sprint through the mist of two water-spraying fish, and get totally soaking wet in the fountain in the middle of the playground's water feature. They’ll also love riding through the spray on the tricycles, cars, and other toys strewn throughout this playground. GMAP
Mount Prospect Playground (Prospect Heights, Eastern Parkway between Brooklyn Central Library and Brooklyn Botanic Garden): This well-shaded park on a hill is the second-highest point in Brooklyn and used to be a water reservoir decades ago. In the playground you’ll find a stone seal that sprays a generous mist, with several other sprinklers surrounding it. GMAP
Harmony Playground (Prospect Park, Prospect Park West at Ninth Street): This music-themed playground located near the Bandshell at 11th St in Prospect Park is AWESOME. Shaky bridge, wobbly bridge, tons of swings, slides (including a twisty slide), a toddler-friendly area, tunnels, large sandbox, and my favorite water feature of all the parks, an upside-down “U” shape mister that gently sprays water towards the ground – just gentle enough that your child can get a little spray or can hang out underneath for a full soak! Bathroom with changing table is a nice bonus as well! GMAP
Imagination Playground (Prospect Park at Lincoln and Ocean Ave): This park is a bit further out, just over on the east side of Prospect Park (near Lefrak Center at Lakeside). A bit more creative in design, this park is inspired by children’s literature, featuring statues of characters from Ezra Jack Keat’s books, a bronze dragon with water flowing down it’s back, and animal masks for kids to hide behind. Three playhouses and an open stage help stimulate children’s imaginations and creativity. A nice break from the typical slides and swings! GMAP
Slope Park (18th St and 6th Ave): For those of us South Slopers, this local playground is very convenient AND happens to be located across the street from a very decent coffee shop, Southside Coffee. My favorite part of this park is the water feature, which includes a little wheel that kids can turn and subsequently water flows out. There are different water spray elements – both horizontal and vertical for children to jump in. It’s a bit more intimate than the larger parks, which is also a positive. GMAP
Hudson River Park Pier 25 Play Area (Tribeca, Hudson River at North Moore Street): Feeling adventurous? In Hudson River Park, you'll find this amazing playground, featuring a cool play area with water guns, sprayers, and buckets that fill up and dump water all over the kids. When they are tired of getting wet, there's a seasonal mini-golf course on the pier that costs just $5 for children and $7 for adults. GMAP
Teardrop Park (Battery Park City between Warren Street and Murray Street, East of River Terrace): Also across the river, and located behind a high-rise, this playground can be tricky to find. But once you do, you (or your kids I mean) may never want to leave. The super long slide dumps kids in a massive sandbox. But in summer, the main attraction is the water play area, where geysers shoot up and soak everything in the vicinity. Afterwards, take a ride nearby on a glowing fish at the Seaglass Carousel! GMAP