Lara and her two kids at the silent auction event she hosted in her home, along with the Leafy Lane Florals bouquet cart providing some joy.
In this inspiring Meet a Mom interview, Lara Thackeray shares her journey from friend to fierce advocate for an amazing cause. Lara became involved with Finding Hope for FRRS1L—a nonprofit supporting families affected by a rare genetic disorder—after witnessing the heartbreaking diagnosis of her friends’ son, AJ. Lara has dedicated her time and resources to raise awareness and funds for a potential cure, demonstrating the power of friendship, community, and resilience.
Where are you originally from and where do you live now?
I am originally from South Africa, and moved to the United States when I was 9 years old with my parents and two sisters for my dad’s job. I now live in New Rochelle via Chicago, Manhattan, Brooklyn, and Larchmont. I’ve been in Westchester for almost 6 years, and have two kids aged 6 and 4.
Can you share the story of how you became involved with the FRRS1L cause?
I first learned about FRRS1L (pronounced Frizzle) disorder when close friends of mine went through the heartbreaking diagnosis with their first child, AJ, at around 2 years old. AJ’s parents, Viviana and Art, are two close friends of mine from my 20’s and we saw each other through a lot of exciting milestones, including our engagements, weddings, and first pregnancies. AJ and my son are 6 months apart, and so we were in close touch about our pregnancies, births, and their first months and years.
In 2019, we traveled to Italy together when AJ was about to turn 2. AJ was holding his food, eating everything he could get his hands on, sitting and standing with minimal assistance, smiling, and engaging with his parents. It was just a couple of weeks after we returned from Italy that we learned that AJ had what we now know was his first major regression; losing many of the basic abilities he had gained up to that point in his life.
After a lot of pain, countless doctor’s appointments, procedures, and international trips to various centers, they learned that AJ suffers from a rare genetic disorder called FRRS1L (pronounced Frizzle). They learned Frizzle had no cure, little research, and an incredible amount of intervention would be needed just to help AJ stay comfortable and from continuing to lose his basic abilities.
Three years ago, Viviana, Art, and other families impacted by Frizzle received incredible news. They had found a team of researchers that felt strongly that they were on their way to finding a cure of Frizzle, but they needed funding to make it happen. FindingHope for FRRS1L was born.
Over the years, watching Viviana and Art fight for their son, and always feeling helpless, I remember often saying to Viviana that I didn’t know how she did it. She always replied “I’m just doing what any mother would.”
Once learning about the very promising possibility of treating and reversing the devastating impact of the disorder, there was an instant pull for me to support in any way that I could in helping them raise the money needed to fund the cure.
AJ and his brother meeting their new baby brother.
How has your friend’s child’s diagnosis personally impacted you and inspired your involvement?
My commitment to help fight for this cause is driven by my love for Viviana, Art, AJ and their family. Through my experiences with Finding Hope thus far, though, I can honestly say that I have learned more than I thought possible through Viviana, Art and AJ and the Frizzle community. I’ve learned lessons that are universal beyond FRRS1L, and have helped me in my own moments of darkness that inevitably are part of this thing called life.
I’ve learned that suffering and hardship can grow someone’s heart; Viviana was always a special person, but since the birth of AJ, I have witnessed her heart not shrink with the pain, but expand with love. Not just love for her child, but for everyone she meets.
When AJ was diagnosed, there was no cure, and little research. But Viviana didn’t take that as their fate – when something is surrounded by love and hope, I have learned that possibility is limitless.
Viviana and Art have shown me in practice what it means to be able to do hard things, and that we all have the capacity to do so.
Lastly, and I think what inspires me the most, is that AJ’s story has shown me that even when you end up somewhere different than you planned, it can still be really beautiful. What Viviana, and the rest of the Finding Hope community has created is just that.
And, every time I’ve held an event, met a stranger wanting to support, or watched my own kids be moved to help, I can’t help but just pause and think how incredible this all is and how lucky I am to be part of it.
What role do you play with the non-profit Finding Hope for FRRS1L, and what has been your experience so far?
Viviana and her team created an Ambassador program that would enable people to join the team to support the cause using their respective networks, skills, and resources to do so. In July, I became the founding Ambassador and committed to raising $25,000, which I have completed, and so now I am hoping to raise a total of $40,000 by the end of the year.
I am so incredibly grateful for this experience; it is certainly a journey filled with love – watching people light up with ideas on how they can support, and offering true empathy for the families impacted by Frizzle is something I don’t think I’ll ever forget.
I’ve also appreciated the opportunity to be creative and leverage the skills I use in my “day-job” of being a talent consultant in non-profit and social impact work. I’ve never formally fundraised before and it’s been fun to grow a new skill set.
Lastly, as someone who has worked remotely and from home for almost 8 years, having this project has allowed me to connect and meet a new set of incredible individuals, including a whole new network of female business owners. These women have donated items, allowed me to bounce ideas off of them, given me brand new ideas to try out, and attended and supported my events. It’s really something else to see how powerful of a force women can be.
Viviana with AJ at his school’s sports day.
For those unfamiliar, can you explain what FRRS1L is and how it affects those diagnosed?
FRRS1L gene disorder results from a mutation and resulting loss of function of the FRRS1L gene. FRRS1L disorder causes the messages in the brain to not get through from one cell to another. These messages affect all areas of function and life for the child.
Current research shows children from birth to two years old having developmental delays, but still gaining abilities, and then at age two begin having seizures that cause regression, and quick loss of function and/or abilities. However, FRRS1L children retain cognitive sharpness. They are basically trapped in a body they can’t move. Children can only control their eyes and are able to communicate with low tech speech methods, and/or eye gaze communication devices.
What are some of the biggest challenges faced by families affected by FRRS1L?
As described by mothers of children with Frizzle, the hardest part of the disorder is watching your child suffer and knowing there is nothing currently available to help them. They suffer from physical pain, seizures, and the internal frustration of not being able to move their bodies. After the regression, they battle respiratory issues, feeding issues, spinal issues, skin issues, and other side effects from not being able to move. They see a toy they once held and played with and they can’t reach out and grab it. They look with yearning eyes to be independent, to not be in pain. It is a daily and sometimes hourly struggle to care for your child’s life. No current treatment can stop the regression or control the epilepsy; and doctors struggle to know how to treat or help these kids because there isn’t anything outside a cure that can help. Outside of the physical and medical struggles, families battle a constant fight with insurance companies, providers and schools just to get basic help and support.
What initiatives or events are you organizing to raise awareness and funds?
I’m excited about a few upcoming events that I have planned!
- The first is a Barry’s Bootcamp class with proceeds going towards Finding Hope, generously donated by Barry’s in Scarsdale. People have a chance to buy a ticket which includes the class and a Frizzle bracelet, as well as purchase additional raffle tickets. The class is being held on 11/24 from 10:30-11:30. Anyone interested in joining can sign up here – spots are limited and so you should sign up soon! After the class, you will get the chance to mingle and enjoy delicious bagels generously donated by Long Island Bagel Company.
- The second event is a virtual silent auction that I will be launching on 11/22 and will end on 11/24. The auction includes items donated from 30+ local businesses ranging in minimum bids from $10-$1000. The auction is by invitation only in order to ensure validity and integrity of all bids – you can sign up here to receive access and instructions on how to join. Check out the items up for bid- there are some really fun ones, that could be gifted for the holidays or kept for yourself. The items include many of my personal favorite businesses from the area including a personal training session for two by Joanna Venar in New Rochelle, gorgeous earrings from my go-to local jeweler, Peridot, and fun and unique host(ess) gift items from Five Love – along with many more!
- Finding Hope has partnered with Minted! Place any order with Minted and use the code FUNDRAISEHOPEFRR1SL to get 20 percent off and Minted will also donate 15 percent of your order back to us! Pro tip: take a screenshot of this code because it doesn’t expire.
- Stay tuned for more events that I will be listed on my Ambassador page!
Lara and Viviana.
Have there been any particularly memorable moments or success stories in your fundraising efforts?
Yes! Absolutely. Since launching my personal campaign, I can truly say that every dollar donated brings me so much joy and appreciation to those who are joining us in fighting for a cure. A few specific initiatives come to mind that were especially heart-warming.
- Firstly, after the initial $10,000 was raised by word of mouth and initial donations by my network, I decided to take see how much further we could take our fundraiser via social media. I reached out to Caitlin Murray of BigTimeAdulting, knowing her commitment of pediatric cancer after her son’s battle with leukemia. I honestly didn’t know if I would hear back given I can only imagine how many requests she received, but after just a few hours of my initial email, Caitlin said yes to reposting a story of mine about AJ and the goal to fund a cure. Caitlin reposted my story, and I couldn’t believe how quickly we started to see donations roll in – it was $5 here and $25 there, from all over the country (and world). Within the 24 hours that my post was on her stories, we raised approximately $5,000 from perfect strangers touched by our story.
- Next, after my 6 year old son watched me fundraise, he asked how he could help. He first started by selling handmade bracelets at a lemonade stand and made $75 doing so. He gave it all to Finding Hope. When I shared this story with Vonnie, the owner of Village Mercantile, she instantly offered for Gavin to use the area outside her store for him to sell more bracelets during Larchmont’s busy Saturday streets. And so he did! This time he raised $615 within two hours of selling bracelets for AJ.
- My biggest event completed thus far was a brunch that I hosted at my home with a silent auction featuring 30+ businesses from the community. Along with the auction, we had delicious food provided by La Mer Seafood in Armonk (my favorite seafood source in the area!), and were visited by the gorgeous bouquet cart of Leafy Lane Florals which just added so much joy to an already inspiring couple of hours. The silent auction and donations raised from that event alone was over $13,000, with all items selling! It was incredibly special that most of the items came from mom-owned businesses. Kid-loving businesses, such as DotDotDot, supported with donations and ideas. Fun experiences were sold including a private wine tasting for 20 in the cellar of Post Wine and Spirits, Larchmont, and a mozzarella making class by AJ Burger’s in New Rochelle. Local authors, Colleen McKeegan, Jess Saunders and Emma Rosenblum, were featured in a book lover’s basket accompanied with wine and a robe. Over 40 women attended from the area.
What are the long-term goals for the non-profit in terms of both research and patient support?
The first goal of Finding Hope for FRRS1L was to find a lifesaving cure, which has been accomplished. Now the long term goals are focused on producing the treatment and getting it to FRRS1L children around the world; supporting FRRS1L families through education and engagement; and last to increase awareness and education of FRRS1L to physicians, medical professionals, caregivers, and the general public.
How can people get involved or contribute to the ongoing efforts for FRRS1L?
- The most immediate way you can support is to donate to the cause directly. Any (truly!) amount helps!
- Spread the word! Share this story and donation link to anyone you that may be moved by our cause.
- Participate in the events listed above (and stay in touch to learn about more coming up)!
- DM Lara at @lara.silvas to share any ideas that you may have on how to continue to support Finding Hope.
Thank you, Lara, for taking the time to speak with us and share this inspiring story! For more features on local moms, visit our Meet a Mom page. Looking for something to do in the Sound Shore Area? Check out our Local Guides and Events Calendar.
Interview by Kelly Postiglione. Photos provided by Lara Thackeray Silvas.