During this most difficult time, many of us struggle with how to approach and navigate the topics of race, racism and the current state of affairs in which we live. How do we best encourage our children to ask questions and ensure that we always validate their feelings and thoughts? We did our best to collect resources, to at least provide a starting point for these very sensitive conversations. Please make sure to check out the link to a video at the bottom of the list, posted by an amazing Kindergarten teacher from Brooklyn explaining the Black Lives Matter protest to her students.
If you have read any other helpful articles, please comment and share what they are so we can all learn more.
written by Jen Valu
First and foremost, speaking on behalf of all of your patients and families who love SSP so much, you are literally an extension of our families and we are SO THANKFUL of all of your efforts to stay afloat in this crisis. We would be lost without you. Thank you for your persistence, your insatiable will and determination to fight for what’s right, your ability to conquer what must have felt totally impossible and total and complete transparency throughout this situation as everything unfolded. We have been right there next to you this entire time. And you did all of this while homeschooling your ten year old daughter.
Would you like to tell us how you did it, how you were able to make the impossible possible and get through this without the initial financial support of the government protection payroll program?
Matteo: Going back to transparency, that was a big moment. We firmly believe in transparency and making everybody part of the decision. A lot comes with transparency , it’s a big risk. The day we decided to go public about the situation - we realized we have 2 avenues we could take. One is that we could pretend that nothing was happening, when we saw troubling signs at the end of March. We could have decided to either forget about reality and tell employees “don’t worry about it - we’ve got it, no worries” and tell our patients “no worries, you will have a place to go to while this is happening”, but it was not the reality. We decided to stick to our core values and decided to be transparent. This implicated risks that come with that.
What was the response to the video you posted on social media, in which you were able to share the truths about what was happening at SSP and the financial crisis you were in?
Matteo: The day I put that video on youtube, so that it’s available to everybody - both patients and those who are not patients, searchable for everyone to show the reality of small businesses in this situation - this was the beginning of the lowest moments for us. We honestly didn't know what was going to happen, but we knew we were going to put people first and patients first. We were going to put all of the money left into the people, and when we’re done - we’re done. Meaning that if we failed, if we ran out of money at least we could say we tried our best and did what is right to do. Provide a service to our patients, which we are still responsible for, and provide for the families of our employees who don’t need added stress to this pandemic. When I posted this video, I knew it was very risky to be that transparent. What I was expecting was a storm of emails about questions such as “Why? I need my records, I need a new pediatrician”.
So I decided to put myself on Instagram Live everyday at 6pm to answer questions. I was expecting to be attacked, to be put down….I was expecting people to come on and say “how can you do this, how can you not find a way - you are a pediatrician’s office, you should be fine”, with the assumption that doctors never have financial problems. Instead the opposite happened. We received emails of support, love and concern saying “I can’t sleep at night, we need to find a solution - I need you to be OK”. The 6pm live Instagram started as a way to answer questions, and it ended up being a brainstorming event with the whole community. And the community said “This is what you should do, you should start a gofundme, here are links to financial institutions that were successful with the first round”. It became a moment that changed from me answering questions, to us listening to the community. The community letting us know how we could fix it, sharing their ideas and they wouldn’t allow such a thing to happen. That’s when we realized - all the work we put into building a community from day one, even when we were called crazy from our colleagues and people in the industry - we were not making a huge profit but instead reinvesting in building a community, taking care of our employees with the ability to give employees special rewards, education and benefits and now our community is now coming back and telling us “You are not going anywhere”.
Dr. Cao: You know it would have been much easier for us on a personal level for us just to freeze, to shutter up and freeze the schedule and leave town, but the love that they gave us really motivated us to keep working on going. The dedication on the other side - from the staff and our colleagues who were responsible for giving me a good attitude during all of this. When you walk in and Tara is at the front desk saying “Let’s make this day happen”. A lot of what came from the Gofundme for me is that we had no choice but to continue and be motivated to find a way out of this mess.
Matteo: To be clear, the Gofundme was an idea from the community, they wanted us to do it. When it was first brought up on Instagram one night and I immediately told the community that we feel awkward - we want to work to earn the money to pay our employees, it is our responsibility to pay the employees, not our community - and they did not want to hear that. They simply told us “That's not the way you should think, not in this situation, we want to”.
Dr. Cao: It was very humbling, deciding to do something like that put ourselves in a very vulnerable situation but the love we got and overshot our goals by far...it was really inspiring.
Since then, the SSP community has purchased the team lunches on several occasions to help make it through this rough patch. How has this outpouring of love made you feel?
Dr. Cao: As far as the lunches, there is something to be said about how we all relate to expressing concern and care in food, there is definitely something comforting about that. Before we were in crisis I was always buying lunch on Friday for the staff to show my appreciation and have time to sit together. I actually cooked comfort food- I actually made mac and cheese once, Dr. Acosta also cooked for us, her mother has cooked for us. Having the meals delivered and catered from the families -we think of them in general, but it was nice to know they were thinking of us.
Matteo: I receive at least two requests a week from families wanting to cover our lunches. It's about the gesture, it’s not about lunch, it's about “we are thinking of you, want to take care of you”. What that does is, it reminds us that we know we are supported - which is a huge deal in this situation. A phone call came in from a doctor’s office in Wyoming who found us online, and started following us. They are in the exact same situation but it's a little different for them because they just now realized how important community is.
Dr. Cao: When you set out to build and establish a business it’s not always the focus. For us, it definitely was the focus and reason I stepped away from a job at a bigger, more stable place.
Matteo: The lunches are also a way for us to sit together and just let it out, touch base. At the very beginning, even during this pandemic we tried to keep Friday lunches, even when families weren’t coming to buy lunches because it's an important moment for us. During those first Fridays instead of laughter, gossip, silly jokes…
Dr. Cao: It was pretty gloomy...at that time we were dealing with Carolina’s sick mother and Carolina was stuck, Lorraine was ill, and Denise’s family was ill…
Matteo: And we went from a team of 13 to a team of 5 within 72 hours. Plus, our daughter had no other option but to come to work during this pandemic and figure out her own learning. We didn’t have time, phones were ringing like crazy, patients needed to be seen, we didn’t have time to sit with her and help her.
Is everyone ok now?
Matteo: Lorraine's family is now ok, it has now been a few weeks. Carolina’s mom recovered, it’s a miracle, because statistics would say otherwise. She just came back last week. Unfortunately Denise's brother passed away. It’s so hard for her to focus, and she’s taking a week off. She might take a couple of days off in the future, I mean I can’t even imagine.
How do you think this has changed you, as individuals and as owners of a private practice?
Matteo: It's a great learning moment. First of all, you realize who your supporters are and you learn as a team leader that transparency is everything with the consequences that it brings. That’s how we have always done it, and that solidifies it. That's exactly how we operate and that’s exactly how we go on. As a team leader it reinforces the idea that there is a natural selection. Some situations are too hard for some people and there’s nothing you can do but listen and be supportive of their decisions. We lost a member of the team to this as they couldn't deal with the stress and we had to say goodbye. And that’s absolutely OK. Moving forward having almost been out of the game financially has not changed the idea that we will keep investing in the community, even though we are not out of the gate financially. We will keep investing in the community and in our people, our team. That is still the priority. Profit means nothing to us. Dr. Cao, who is the owner….8 years into it, has never cashed a profit share at the end of the fiscal year. He’s put everything back into the business. Every single year.
Dr. Cao: It’s not about the number, when we first started the practice I didn’t take a paycheck for the first 6 months. Slowly I started getting paid. During the Covid19 crisis I’ve been working sometimes 6 days a week, because newborns need to be accommodated for, since they are discharging early from the hospital and I'm getting half my paycheck while working more than I normally do. It’s definitely not about the money. The reason we work hard is so we maintain our accountability for our clients because people need medical guidance and we can provide our staff with a job to support their families. Kids need to be vaccinated, and there's a sharp decline… The AAP just put out statistics of immunizations in March, April and May. It dipped - it went over a cliff essentially. So, I’m afraid that we’re going to have a second wave of vaccine preventable diseases which is a huge insult to injury at this point.
Matteo: From a business point of view, SSP has always been about giving the best experience possible to everyone. Whether that is a customer or a team member or 3rd party vendor, that is our goal. Now that we’re in this pandemic- even when we were a team of 5, although struggling to do so - we tried to give that same kind of experience. We learned we don’t need a team of two thousand to get things done. I was personally working 4 jobs while trying to save the company from disaster. Things needed to get done. I realized I was in pain while I was doing it, I was on the verge of crying - I had panic attacks while at work, and they manifested physically. And then I had the five people there telling me “You know what we’re going to do? We’re just going to do it”. When I was ready to just give up. That shows that not only what we can achieve with five, but now when we have twelve - we can do even better than what we were doing before.
Although we are clearly not out of the woods yet, you have certainly navigated through what is hopefully the most difficult period. What and who are you most thankful for now and what do you want the SSP community to know?
Matteo: We can promise that they will always know what's up, that if we need a moment because we can’t catch up with things to do, we will let them know. That our goal is to add value to this crazy journey we are all on as parents and that’s why we’re trying to convert our free classes to virtual, and do more zoom events about anything. We are working on a zoom sleep class, because a lot of kids are having problems. And we’re working on contacting a therapist on zoom to help out with the emotional journey that teens and preteens are going through. It’s apparently hitting them harder than a lot of other ages.
Dr Cao: I also want people to know how much they are appreciated, to know they are the fuel for us, to keep moving forward. Moving forward some things may be changing that are beyond our control but that we are trying to make decisions that will enhance their experience. We appreciate everyone’s flexibility - we’ve had to make weekly changes as this evolves weekly, so we deeply appreciate everyone’s flexibility.
We feel humbled and energized by all the support our community has shown during the uncertainty and anxiety COVID19 has brought to our company and lives.
This is our simple way to give back to our community and to say Thank You.
Here's the SSP infant CPR crash course for you to keep. Stay safe.
Your SSP Team :-)
More videos on our Instagram Account
#cpr #cprclass #pediatrician #grateful #community
The healing power of laughter and gratitude cannot be underestimated, especially now. Let’s all remember to say thank you again and again to all of our first responders and health care workers - maybe this means posting words of encouragement on their social media page, or calling someone and telling them how much they are appreciated and loved. And there are plenty of ways we can help folks. The Food Bank of NYC is helping deliver much needed resources to those in need. Let’s do all we can!
For our personal happiness, we must savor those smiles and funny moments, which our children surely provide us with. We reached out to our SSP families to see what you are most thankful for…..and what those new “coworkers” up to while you are trying to work. Get ready to smile.
What are you most thankful for? Here are your responses, in order of popularity!
And very importantly, what are your kids/“coworkers” doing while you are trying to work?
SSP families, thank you so much for contributing to this and helping bring smiles and laughter to all of our readers. We needed that. We’re in this together!!!! Virtual hugs to all of you!
Now that we are all facing many, many days at home with our children, we are put to the task of keeping them busy AND fostering an environment for them to continue to learn while their school doors are shut. For those of us who are also balancing working remotely from home, this is extra challenging! The number one thing that many educators are stressing is to create a routine. Kids love a schedule, and while they might moan when you mention “math time”, they will appreciate knowing what to expect (and will look forward to those snack and play breaks)!
Here are some helpful tips to planning your days ahead:
For a list of all education companies offering free subscriptions due to school closings, click here: https://kidsactivitiesblog.com/135609/list-of-education-companies-offering-free-subscriptions/
Let’s not forget that us adults will miss our time exploring, seeing, and getting out and about. Here are a couple of ideas that will help us keep our sanity and continue to learn and explore from our couch:
From portraits of your child or dog, to dinosaurs and butterflies, to The Very Hungry Caterpillar, FizzlePop Puppet Shop stitches custom felt finger puppets, barrettes, holiday ornaments, magnets, bookmarks, and magic wands that are playful, colorful and fun! Lauren Franklin, a mother of two small children, decided to turn her creative hobby into a business four years ago and started selling these whimsical felt pieces for all of us to enjoy. Let’s learn more about Lauren and her small business in this month’s interview!
SSP: How did FizzlePop Puppets come to be? What led you to starting this new business?
In 2015 when my now 5 year old daughter was a baby, we received some finger puppets as a gift that she adored. Since I always enjoyed crafting and dabbled a (very) little bit in sewing, I decided to create some puppets myself. They were a hit, and I soon began making some for her little friends, even taking requests, like a butterfly or Cinderella, for example. That summer, a friend of mine who runs a local monthly flea market offered me a booth to try my hand at selling to the public, which was an exciting but scary prospect. That's when FizzlePop Puppet Shop was born! I then began making custom birthday favors that matched a party's theme, which is way more personal and sustainable than a goody bag filled with tiny plastic toys that will ultimately get thrown away. I've made cartoon characters, dinosaurs, or female superheroes for parties! The puppets were exciting to me for many reasons, but perhaps one of the most compelling was the way it encouraged dramatic and imaginative play with manipulation of actual objects (and not screens!). We never take an airplane or car ride without finger puppets! It wasn't long before I started participating in other craft collectives and markets in Westchester and Brooklyn. I also have items in a store in northern California. In addition to the puppets, I now make barrettes, ornaments, magnets, magic wands, book marks, Easter egg treat holders (instead of plastic eggs!), and all sorts of custom orders from dog felt portraits to obscure ornaments (Post Malone's face, Gizmo wearing a Santa hat...) Everything is hand stitched by me!
SSP: Can you tell us a little about the creative process that goes into each piece?
I absolutely love the art of making something meaningful out of nothing but felt and thread. I particularly enjoy custom order requests for dogs because I usually sit with a photo of the subject for a while and do a fair amount of thinking about how to tackle it. It's like a puzzle. The magic for me is in the transition from the idea in my head to the actual finished object. There's no real blueprint, and each project is different. It's extremely satisfying. More generally, I just love the colorful and whimsical aspect of it all! Simply put, I draw inspiration from things I or my kids enjoy or find humorous.
SSP: How do you balance your work and being a mother of two small children?
That's the trickiest part! It took me almost a year and a half just to create a website. I joke that everything FizzlePop is mostly completed when my children are napping. I'm not sure I even have found balance! I've spent way too many late nights sewing because I didn't want to stop working on an item. I am, however, extremely lucky to have an amazing and supportive husband who encourages me, and the nature of being able to create in my own home is to my benefit as well.
SSP: What piece are you most proud of, and why?
That's a tough question. I once made a felt portrait based on a picture of a couple who were cheek to cheek and slurping some Udon from a bowl. I was thrilled with how it came out, and so were they! I recently made a 13 inch felt nutcracker for a Christmas tree skirt that was very sweet. Of course, my Sgt. Pepper's Beatles puppet set has always been one of my favorites.
SSP: I must say, I'm a huge fan of the Rock and Roll inspired collection and the Post Malone is absolutely hilarious....what was the recipient's response when they received this?
I think the recipient's response was happy shock! I wish I had been a fly on the wall for that reveal. Hand stitching all of those face tattoos was a fun challenge to say the least!
SSP: Where can we find your creations, and how do we contact you for a custom piece?
You can follow me on Instagram @fizzlepoppuppets where I post new pieces or info about upcoming markets. You can also browse around on my website at Fizzlepoppuppetshop.com . While you can't purchase through the website yet, you can email me at email@example.com with items you are interested in, and I accept Venmo for orders or cash and cards at markets.
SP: Do you have any words of advice to other moms and dads who are interested in turning their creative hobbies into a business?
Take the leap! Go ahead and try it, and you'll likely surprise yourself. Also, start out slowly, and take on only what you feel you can handle given the many other responsibilities you undoubtedly have to tend to. I suppose above all, it has to bring you joy.
It's a new year, and for many of us a resolution will be to take better care of ourselves. For some moms, this may mean seeking therapy as a means to a healthier 2020. Meredith Carlisle, a licensed Clinical Social Worker with over a decade of experience and a mom of two young boys, has just opened up her own practice in Manhattan to help support moms during difficult transitions in their lives. Through supporting your personal growth and self-awareness, Meredith can help empower you to take that next step. Let's learn more about her and her new practice in this month's interview!
SSP: Can you please tell our South Slope Pediatrics families about the range of services it is that you provide as a licensed clinical social worker?
My focus is women’s mental health across the life span, with a speciality in maternal mental health and the transition to motherhood. I work to support women during significant life changes, but especially women experiencing distress or symptoms of anxiety or depression during pregnancy and postpartum (aka postpartum depression). I provide individual and group therapy where I support women to increase concrete coping skills while also processing all the changes they’re facing.
SSP: We'd love to learn a little bit more about you, and how your experiences led you to this new exciting venture. How did you get here?
I’ve been a clinical social worker for a decade and have learned so much during that time! My background working with kids really taught me the importance of supporting the whole family and how taking care of kids actually means helping parents take care of themselves. I loved designing and running parent groups more than I expected and was surprised how it supported my work with my child clients. Once I became a mom and experienced first hand all the challenges moms face during this delicate time I felt even more committed to helping moms as a route to supporting the whole family. I feel so privileged to work with moms during this unique time in their lives.
SSP: What made you decide to open up your own practice?
Opening a practice is something I’ve always hoped to do since getting my masters in social work and I am so grateful for the opportunity to grow as a therapist and - now - as a business owner. I also work at an amazing organization called The Motherhood Center, where the work I do with moms is short term (6 weeks). My private practice work compliments that by providing the opportunity for me to support women and moms for a longer stretch of time.
SSP: If you had a mission statement, or a philosophy central to your practice, what would that be?
Central to my practice is a concept based in a model of therapy called dialectical behavioral therapy: the idea of integrating both acceptance and change into our daily lives. More broadly, it’s the idea of finding balance between (which doesn’t mean 50/50 most of the time) all the competing demands, feelings, and expectations of our busy lives.
SSP: Many of the maternal mental health services would be of particularly of interest to our families - challenges with pregnancy, postpartum and miscarriage. One challenge listed is rather universal to most moms - the loss of identity in motherhood. Can you tell us how you address that?
New motherhood is a time of enormous transformation in a woman’s identity, sense of self, and relationships. Often times women think this transition is supposed to be either natural or instantaneous, but the reality is that it's something that happens over a much longer period of time than expected. I work with women to grieve the tangible and intangible losses that come with new motherhood which makes space for the newness each of us face.
SSP: What are your ultimate goals when you are helping a client?
My goals are always what a client brings into therapy as their priority, but I also aim to help them feel comfortable and supported while arriving at more awareness and acceptance of themselves. Ideally, through our collaboration, my clients also feel more equipped to manage the difficulties and stresses of daily life and parenting in NYC.
SSP: When do you recommend someone to come speak to you, when is the right time?
Anytime is the right time. Starting therapy is a big step, and it can be daunting for women who already have a lot of demands on their time. However, if you’re finding that you haven’t been feeling like your usual self for more than a few weeks it might be time to speak with someone.
To learn more, you can contact Meredith at firstname.lastname@example.org.
Alas, it’s holiday time in NYC! And it’s so cliche but it came faster than ever this year! At SSP we tried to scour and search for some of the best things to do with our families, most are very local and others are closeby in the neighboring boroughs. Do you know of something amazing we might have missed? Please comment on FB and share your ideas with us!
Through 12/17 at SSP: First and foremost, one of the most important things we can do with our children is GIVE BACK. The holiday season is a perfect time to teach children about the importance of giving back to those in need. Come by SSP with new toys and books for our annual Toy Drive. This year we are collaborating with Woodhull Medical Center, a Brooklyn based hospital. This is an initiative helped our own Dr. Cao and his family during his childhood. Do you have clothing? We are also collecting for the LGTB homeless youth in collaboration with the ALI Forney Center! (Mint condition clothing only please).
Nightly in Dyker Heights: If you haven’t seen already, some of the most incredible Christmas light displays can be seen in the Dyker Heights section of Brooklyn, aka “Dyker Lights.” Over 100,000 people flock to this area every year to see the most over-the-top Christmas decorations. A sure way to get into the holiday spirit!!!
Brooklyn Nutcracker at King’s Theater: A re-imagined holiday classic, The Brooklyn Nutcracker fuses ballet, hip-hop and a myriad of world dance genres to create a new tradition for today’s audience. New York’s only culturally inclusive production, The Brooklyn Nutcracker transforms familiar Nutcracker characters and scenes to represent the diverse traditions and vibrant culture of melting pot Brooklyn. From the landscape of the old Dutch Brooklyn to the iconic Flatbush Avenue, the production is fresh and full of virtuosity and celebrates the borough we call home.
Angelina Ballerina Holiday Show at Vital Theatre in SOHO (Select Saturdays only): The Very Merry Holiday Musical! Angelina and her friends are planning an absolutely positively spectacular holiday dance pageant; the best in all of Mouseland! When a mix-up prevents the pageant from going on, Angelina and her friends must use their creativity to save the show. By working together, Angelina, Alice, Gracie, AZ, Marco, and Angelina’s little sister, Polly, discover the true spirit of the holidays. It's not about things you receive, but the holiday cheer you share. With dancing, singing and festivities, this heart-warming musical is perfect for everyone's holiday season!
Light up MetroTech on 12/4 in East Flatbush: This old-fashioned Dutch Christmas celebration at NYC’s oldest house will start with a traditional concert by colonial balladeer Linda Russell at 1 PM. There will be a visit from the original Santa Claus, who arrives on horseback at 2:30 PM. In the Dutch tradition, visitors can feed the horse carrots and hay. Learn about how Sinterklaas evolved into the tradition of St. Nicholas while enjoying crafts, music, snacks, and decorating the tree for the tree lighting at the end of the day. Children are invited to sign the Red Book with St. Nicholas. $7 for general admission (ages 11+) and $4 for child tickets (ages 3-10).
Dumbo Tree Lighting on 12/5: The 15th annual tree lighting event includes “Carols, Calypso, and Cocoa” in addition to the tree lighting and another opportunity to meet Santa Claus on Thursday, December 5th in the Pearl Street Triangle. Calypso music will be performed by Brooklyn-based steel drum band Jah Pan and caroling by PS307 and Dock Street Middle school choirs and more. Hot cocoa and sweet treats as well animated videos projected onto the Manhattan Bridge! The tree will be lit at 6 PM sharp.
Christmas Tree Lighting 12/7 at Greenwood Park: Festivities start at 4pm, tree lighting approximately at 6pm. Take photos with Santa, make a handmade wreath! Take pictures with some of your favorite holiday characters!! We will have special snacks on sale along with our regular menu + hot chocolate to warm you up for the lighting of our beautiful 33’+ Balsam Fir.
Lighting of the Menorah, Starting 12/22 at Grand Army Plaza: Live music, hot latkes, and a 60-foot boom lift await you at the lighting of the largest Menorah in Brooklyn. Special gifts are given out to every child.
Holiday Train Show at the NY Botanical Garden in the Bronx: While there are other holiday train displays in and near NYC, none compare to the NYBG's annual show, which celebrates its 28th anniversary this year. More than 25 model trains (yes, including Thomas the Tank Engine) go whizzing by approximately 150 NYC landmarks meticulously made out of acorns, twigs, bark, berries, and leaves. This year's edition showcases Central Park, with new replicas of its iconic architectural features including Belvedere Castle, the Dairy, and more. Also making their debut this year are One World Trade Center and the historic Battery Maritime Building, along with two classic Staten Island Ferry boats.
Brooklyn Holiday Bazaar, Sundays in December in Gowanus : More than 60 makers will help shoppers usher in the holiday season at this special weekend market at 452 and 501 Union Street in Gowanus, Brooklyn. The curated market will feature food and drink vendors, a live DJ, photo booth, kids’ crafts and more. But while you’re having all that fun, don’t forget to shop from the selection of local and indie makers.
LuminoCity Festival through 1/5 at Randall’s Island: Twelve acres of radiant art will take over Randalls Island with three fairy-tale themes: Winter Fantasy, Wild Adventure and Sweet Dream. You can wander through the colorful LED arches of the Donut Tunnel and get lost in the snow-covered trees of the Frosted Forest for an electrifying experience that is the epitome of merry and bright. Be sure to explore the children’s printmaking workshop (various dates, walk-ins available; $29) and other activities, then refuel with snacks from Nathan’s Famous, Baked in Color and other eateries.
10 years ago, a life changing event happened to Jill Wood and her husband Jeremy Weishaar. They found out that their little baby boy, Jonah, was diagnosed with a fatal rare disease, Sanfilippo Syndrome. Dr. Cao was instrumental in his early diagnosis, and this began the beginning of a very special friendship between Hai and Jonah. Please take the time to read this interview and learn how we can help our neighbor Jonah, and all of the other beautiful children fighting this terrible disease. THEY NEED OUR HELP NOW.
SSP: Before we get into the science and most recent research accomplishments, can you tell us how our good friend Jonah is doing today?
Thanks for asking. I love to brag about how amazingly well Jonah is doing! Dr. Cao met Jonah for the first time at Jonah's first year well visit. Dr. Cao noted that Jonah had a large head, off the scales and suggested that we go for an MRI. It's probably nothing... But let's make sure. First we went to see a neurologist that echoed Dr. Cao's advice. Dx day arrived a year later and was delivered by our geneticist. To summarize Jonah, has Sanfilippo Syndrome an uber-rare genetic disease. Life expectancy.... Not good. Jeremy and I were left with the assumption that Jonah would never say the words "I love you", he'd never be potty trained or eat independently. But first he'd go through the terrible 2's times 100, then plummet to a 1 year old in a teenagers body, leaving us wishing for the terrible 2's times 100 again.
We celebrated Jonah's 11th Birthday in July. Summer Birthdays are hard, everyone is out of town. Summer Birthday parties for a special needs children are even harder. Jonah only receives one or two birthday party invitations a year, his peers have outgrown him. Despite the birthday party invite obstacles, Jonah had the best day ever, several of his classmates from PS10's self-contained classroom, 460 came out to celebrate. Jonah was overwhelmed by all the love. A few days after Jonah's birthday we received word that Jonah had been accepted into the Manhattan Star Academy-Upper School. WOW! 2 months in and it has been the single best thing that has happened in our lives since Jonah's diagnosis. Special needs parents and All parents... Worry about their children at school. School is Scary for all of us. Truth be told.... I secretly wanted a para for Jonah to protect him from bullies. At Manhattan Star Academy all of our insecurities have been squashed, he is in the best hands possible. Jonah is thriving, he wakes up on weekends and asks if he can go to school today?! Health wise he has had no major complications (knock on wood) he has not regressed cognitively, Jonah is in a good place. Saving Jonah's life will take everything within our power. Knowing that Jonah is happy during this time is the best medicine that we could have.
SSP: For those SSP families and friends who are not already aware, can you please explain what ultra-rare disease Jonah has, and how children are affected by it?
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 defective gene to Jonah. There isn't a 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.
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: It has been a while since we last caught up with you. Can you share any updates over the past year - I understand JJB has joined forces with the Cure Sanfilippo Foundation? What does that mean for you?
Yes, JJB has joined forces with our friends at the Cure Sanfilippo Foundation. Knowing that JJB's initiatives are in good hands with CSFF has allowed me the opportunity to direct my attention to taking our pre-clinical drugs to the clinic. The Cure Sanfilippo Foundation is ran by Eliza's parents, Glenn and Cara O'Neill. Cara A.K.A. Dr. O'Neill is a pediatrician; giving her an extra layer of understanding of this disease and what it will take to develop a treatment. The Cure Sanfilippo Foundation is committed to helping us raise funds towards a clinical trial for Jonah and the other children suffering from Sanfilippo Syndrome.
SSP: Where are you in regards to finding a treatment? What is the current research?
This past September my biotech, Phoenix Nest Inc. had our first Pre-IND meeting with the FDA i.e. an early Investigational New Drug meeting with the Food and Drug Administration. At this meeting we presented our data on the pre-clinical research for our proposed new drug. As you can imagine, it is quite the process. The fact that we're proposing to take a novel type of drug, a gene therapy and delivering it into the brains of pediatric patients triggers a very strict set of clinical trial guidelines. The FDA gave us some suggestions on how we can better convince them that our proposed route of administration is indeed safe. The FDA's suggestion will add another year onto our pre-clinical research and cost another $305,000. This isn't a setback, it is an opportunity to take advantage of the situation and incorporate a recently developed technique! Yes, the new study will cost us a ton of money but it will be a blessing in disguise.
SSP: As we’re coming to the holiday season here, many of us are looking for ways we can give. It’s especially meaningful as you are our neighbor and a very close friend of Dr. Cao’s! What is the best way for us to contribute? Is there anything we can do on a local level to support you?
That is very kind and much appreciated ask. One very simple way to help is by adding the Cure Sanfilippo Foundation as your charity on AmazonSmile. com. Secondly, you can donate here https://sanfilippodev.wpengine.com/meet-the-families/jonah/ Lastly, please follow our social media pages and share our story. https://missionhideandhelp.org/
SSP: What would you like for us to know about Jonah, and other children who live with this disease?
Jonah is an optimistic, happy and courageous 11 year old. Jonah is harboring an insidious disease that could take his life without cause during sleep. We are reminded of this today, as we mourn the passing of Ross, an 11 year old boy who lost his battle to Sanfilippo yesterday.
Thank you all for continuing to support JJB though CSFF!
xo Jill, Jeremy and Jonah
**** November 16th is World Sanfilippo Awareness Day. Learn how you can show your support here: https://curesff.org/worldsanfilippoawarenessday/ ****
Jonah's Just Begun is now under the umbrella of the Cure Sanfilippo Foundation. Please continue to support our efforts to Cure Sanfilippo by donating to CureSFF.
Join our Mission, "Mission Hide and Help"
We’ve all been there. Chasing our little ones at the park and all around town, wishing so badly we had a third arm so we could properly manage our baby, change them, and have access to only the absolute essentials...and not spend ten minutes digging through our too large (and often unattractive) diaper bag. Good news, your wish has been granted! Well, not a third arm... but the bag that directly addresses these challenges. Welcome Nell Shapiro, an SSP Community Parent, whose vision to create a trendy diaper bag fanny pack has come to life! Learn more about why she designed it, it’s key unique features, and why we might all want to consider getting in on her kickstarter campaign and purchase this “deliberately minimal diaper bag”!
SSP: What led you to developing this “deliberately minimal” diaper bag? Can you please tell us a little about your background?
I remember walking into Cafe Du Jour wearing my first son Theo in a baby carrier when he wasn't even 3 months old. At the time I was using the over-the-shoulder diaper bag that I had spent hours picking out and putting on my baby registry, and I just remember so vividly saying to myself, "I am never going to carry this bag again; I can't stand anything about it!" I just could never figure out where the straps should go, or how to minimize the bulk, and I could never easily find the one thing I was looking for. The digging and the weight, the bulk and the burden had to go. I daydreamed of a fanny pack turned diaper bag, and I poured over websites and baby shops for months but found nothing. I ended up settling instead for a steady rotation of tote bags, because my background was in education, not design. So while I had a clear dream of the diaper bag I wanted, I had no hard skills to bring it to life.
SSP: How did you come up with the design of the Kibou?
When I became pregnant with my second son, I knew I had to do things differently this time. I had moved into the world of the diaper backpack, which was a solid improvement, but so often it was way more space than I needed. It tempted my innate urge to overpack and left me digging, always.
The picture I'd had in my mind for the last two years of this minimal diaper bag that could be worn on your waist had never left me. So I went on Amazon, I bought different fanny packs, at least 5 different kinds of changing pads and multiple reusable wipes pouches. I started working out the design by cutting these bags apart and then sewing and pinning the pieces back together with safety pins. These mockups slowly made their way into sketches and drawn plans and eventually a couple of close friends connected me with a bag designer they knew in Harlem who could help me to begin creating a real prototype. That was over 2 years and 13 prototypes ago!
SSP: Other than fanny packs being all the rage and a very current fashion trend, what is it about Kibou that makes it such a desirable diaper bag for new parents? What challenges does it address?
Once I decided to make a real go of this bag idea, I asked one of my closest mom friends to partner with me as a creative director. Since day one, Stephanie and I have been committed to achieving the perfect balance between function and fashion. While the design of the bag has always been driven by its diaper bag purpose, the bag also had to be beautiful! Moms and Dads deserve to look good and feel good even when we're out with our Little Ones :)
But aesthetics aside, what makes Kibou different from other diaper bags, is that every single dimension, fit and function of the bag is driven by those essential items that parents report needing most when they're out of the house*. We made the bag just large enough to fit those items, and we left out the rest. For brand new parents, the truth is that it takes time to identify what those items are that you need most. You may feel most comfortable bringing extra swaddle blankets or burp cloths, outfits, even spare bottles. But once you're a few months into parenting, for typical trips out of the house we've found that most parents need the same few items each time they go out. Kibou means "Keep it By You", and the Deliberately Minimal design means that it fits comfortably on your waist and goes everywhere with you, effortlessly.
*Based on a 2018 survey of over 200 parents across the US and Europe that we conducted through Survey Monkey.
SSP: The idea that it’s hands-free and you’re no longer lugging a bag around is especially attractive to those of us in the city and constantly on the move. What would you say is the #1 most popular feature and biggest selling point that sets it apart from other diaper bags on the market?
People gush most about the built-in waterproof wipes pocket. The pocket is located along the back of the lid and is accessible while you're wearing it, at the pull of a zipper. There is something truly liberating (almost empowering!) about having a wipe at the ready as soon as your Little One has a gooey sneeze or puts their little hands right on the edge of a city garbage can. Plus, that same wipes compartment is completely accessible while you're using the changing pad that folds out of the back of the Kibou. So your Little One can rest their head on the bag, their body on the pad and you can pull wipes out of a waterproof zipper compartment all at the same time!
SSP: This also looks more unisex than most bags. Have you seen interest from dads as well?
100%! It's been awesome to hear from many dads who have told us they love fanny packs. And we absolutely wanted to release colorways that would appeal to diverse tastes. Vegan leather is not only incredibly durable and easily cleanable, but it's certainly gender-neutral.
SSP: I love how you show that it is not only a useful bag for that baby phase, but that it “grows with you” through toddler and bigger kid stages. Can you tell us more about how that works?
This was so important to me. I didn't just want to create a bag that would be relevant for a few months in a parent's life. I personally stopped carrying a changing pad well before my sons were out of diapers. So I spent a lot of time thinking about those items that we need most when we're out, and perhaps ones that we don't always have--for me anyway, that's always been bandaids and first aid supplies. It felt so obvious! Our super compact changing pad could be effortlessly swapped out for a first aid kit--what we have come to call our "Bou-Boo Bag."
Beyond this function, the main pocket is designed to fit diapers through size 6, but it can also fit a range of bottles and water bottles or snack choices. One mom even discovered it fits her own Kindle, headphones and socks for barre class!
SSP: How can we help support your kickstarter campaign and purchase Kibou bags?
Please visit our Kickstarter page to preorder a bag for yourself or a loved one! Our goals of $26,000 will go directly to funding our first major production run, and if we exceed this goal, we intend to continue building the brand and outreach to bring Kibou to parents everywhere looking to minimize and simplify their trips out with their Little Ones. It's not just a tag line, having a Deliberately Minimal Diaper Bag by your side truly allows your hands and mind to be free to focus on what really matters!
Kibou is entirely a labor of love, funded from our own pockets, designed and developed at night and on the weekends when Stephanie and I weren't working or with our children. We are so grateful for the support of every single person who has taken their time to learn more about this bag, shared or purchased a Kibou. We hope you'll join us and keep Kibou by you, too!