 Tara Shuman's cancer-survivor journey began with a devastating triple-positive diagnosis 12 years ago. She fought and survived, and to this day she continues to fight and advocate for the breast cancer community. Now she's on a mission to teach and mentor others to find the courage and fortitude - and a let's-figure-it-out approach to learning - not only how to solve problems and bounce back from trauma - but to bounce back to even greater heights on the way back up. Fueled by a deep sense of gratitude, purpose and 'survivor's guilt' following her own harrowing fight against a rare type of breast cancer over a decade ago, Tara Shuman became a fierce and determined advocate and teacher for other people out there who find themselves along a challenging and lonely journey of their own. She even wrote a beautiful book about it which chronicles her cancer journey, called "Hope is a Good Breakfast". At her very core, Tara is a teacher by nature. In fact, it's the reason she left a cushy, high-paying job at a law firm (following law school) to pursue a career - an unquenchable passion, really - that would allow her to teach others to tackle similar life journeys and circumstances with a mindset of positivity, teamwork, critical thinking and teamwork. And Tara has an unwavering faith in human beings' ability to not only "bounce back" from trauma, but to bounce back even stronger and more resilient than where they were before. Tara grew up in Canton, Massachusetts (my hometown) - that's how we reconnected - and, come to find out, she and I actually shared many similar interests and activities while growing up in the town - including math team (don't laugh), team sports, study halls, etc. One could say that we "learned how to learn" the same way, and from the same education system and teachers. We chatted back in early June 2024 - video clips from our conversation are included below. I think you'll find it interesting and inspiring, just like I did. Lastly, the Sanfilippo Project is honored and grateful to Tara for not only her time and telling her story, but also for her eager willingness to lean into this project with us (per my request) to help drive greater understanding and knowledge about not only the Sanfilippo life but also "rare" journeys in general. We all have so much to learn from one another. To hear more from Tara, check out this Ted Talks speech that she delivered last year. It's a powerful message that will resonate with every viewer in one way or another. Tara Shuman is a teacher, business owner, and former attorney. She loves teaching a wide variety of subjects, and is most passionate about helping students of all ages and backgrounds improve their reading, writing, and speaking skills. Tara believes that strong communication is the foundation of all positive personal, professional, and community relationships. Tara’s 12 years of full-time teaching experience, as well as her 7 years of experience practicing health care and immigration law have taught her valuable methods for simplifying complex information and effectively sharing it. She spends her days creating, writing, and teaching at the learning centers she owns and operates south of Boston. As a cancer survivor, Tara is passionate about supporting those navigating a cancer diagnosis and she continues to dedicate her time to raising money for cancer research. She has shared her story with many large audiences and enjoys teaching others how to hone their public-speaking skills. She lives in Canton with her husband, two kids, and their dog, Hope. See below for video segments from our conversation... Hope you enjoy it! Below, Tara talks about her sudden and completely unexpected 'triple-positive' breast cancer diagnosis (at age 32) and then turning to writing and blogging to share her story. "It feels good to feel seen", she says. The one thing that rescued me (from despair) - every time - was the knowledge that at least it was me, and not one of my kids, going through it" In the following clip, Mike attempts to explain his overarching vision for the Sanfilippo Project, in the hopes that Tara will be willing to help pitch in if called upon to do so ('absolutely, I'd be happy to' was her response). Tara then asks some questions to try to make sense of what Mike just attempted to explain (and understandably so, because he was pretty vague). She then shares some of her own passions and interests as an educator - and how her own personal/medical journey have inspired her to help others "learn how to learn" to not only pick themselves up from trauma - but to then bounce back even stronger and more resilient than ever. Not only are we trying to help build resilience (to trauma/etc.), but we're also building anti-fragility too"
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 Sanfilippo mom and fierce advocate Brittany Lagarde will do and try anything it takes to keep her daughter (Sawyer) going - including eye-gaze technology that has opened her eyes (literally) to an exciting new communication ability - and incredible potential for children everywhere with neurodegenerative conditions.  In a recent conversation (on 6/21/24), I had the pleasure of speaking with Brittany Lagarde, a devoted Sanfilippo mom from Wisconsin (now living in Minnesota). She and her husband Sam have two kids - Sawyer (Sanfilippo type A) and Zion (an amazing little brother). Despite being non-verbal, Sawyer has made remarkable strides over the past couple months in 'speaking' to her family thanks to an innovative new eye-gaze communication device. Brittany shared her (still new) journey with this device, explaining how it works and the profound impact it has had on their daily lives. Essentially, this eye-gaze communication device tracks her daughter's eye movements, allowing her to select words, phrases, and even entire sentences on a screen. This breakthrough has given her daughter a voice, enabling her to express needs, emotions, and thoughts in a way that was previously unimaginable. The specific eye-gaze technology Brittany's daughter uses is the Tobii Dynavox EyeMobile Plus. This device combines a tablet with eye-tracking technology, allowing users to control the device with their eye movements. It is designed to be intuitive and user-friendly, making it accessible even for young children and those with limited mobility. For families affected by Sanfilippo Syndrome, tools like the Tobii Dynavox EyeMobile Plus offer a glimmer of hope and a tangible means to enhance communication and connection. For more information on this technology, visit the Tobii Dynavox website. We are very grateful to Brittany for sharing her experience and inspiring others in the Sanfilippo- and rare disease communities at large. To follow Brittany (@happylagardeless) on instagram, click here. Or search for @happylagardeless. To watch an adorable video of Sawyer 'speaking' to her parents using this innovative new eye-gaze technology, click here. Below you will find two video segments -- the first is a 4-minute clip of Brittany explaining the eye-gaze communication device and how it works. The second is the full (20-minute) conversation. Brittany explains the eye-gaze communication device (4 minutes long): Full interview (6/21/24) with Sanfilippo mom Brittany Lagarde (20 minutes long):  A few years after her son Lucas passed away from Sanfilippo Syndrome, Iowa (IA) mom Stacey Montgomery was taken aback by a question posed to her from a newly diagnosed Sanfilippo mom looking for answers - "What do children with Sanfilippo actually die from?" As Stacey explained (during a Sanfilippo Roundtable conversation that took place in 2022) , it’s a complicated question - and each child's journey can be quite different from other children's.  New York mom Kathleen Buckley was (and still is) an accountant by profession, with no science background whatsoever, back when her son Matthew was diagnosed with Sanfilippo Syndrome over 15 years ago. But what she did (and still does) have is tenacity and the willingness to put in the long, hard hours when there's a problem that needs to be tackled and solved. Kathy used that tenacity and grit back in 2008 to start up the Team Sanfilippo Foundation, a 501c3 nonprofit medical research foundation dedicated to the funding of potential therapies and breakthroughs that can be part of clinical trials in the near future. To learn more about the Team Sanfilippo Foundation, you can visit their website here. You need to know the disease inside and out in order to be able to make informed investment and spending decisions for the foundation."
CRISPR is a technology that allows us to cut out a specific part of the DNA, and put in a new (and better-working) part in its place" - Sage Arbor PhD, Duke University biochemist  "I've wanted to be a chemist since age 10" -- SFP chief science correspondent Dr. Sage Arbor, PhD (biochemistry) Non-profits, foundations and 501(c)3 organizations - A lawyer breaks it down (in layman terms)1/18/2024  Canton MA native (now a DC resident) Eric Paisner is not only an avid and active supporter of the fight against Sanfilippo Syndrome - he has donated, advised, and actively participated in the Save Connor / Cure Sanfilippo Foundation fundraising campaign over the years - but he also happens to be a lawyer. And a very smart one at that. So I called upon my former high school classmate and longtime close friend to share his wisdom with us. Eric has worked most of his career as an attorney in the non-profit space, and therefore knows the ins and outs of setting up and operating nonprofits and foundations. In the rare disease world, parents and caregivers often hear a lot of jargon and conversations around non-profits, foundations, charitable giving, etc. What is a 501c3? And why are certain fundraising vehicles tax-advantageous over others? This lawyer explains.  Her son Carter (Sanfilippo Syndrome, type A), now 11, was diagnosed with chronic pancreatitis just shy of two years old. And he spent nearly 80% of his second year in life living in a hospital. Shortly thereafter, it was portal vein thrombosis (PVT) that was causing major medical complications. Eventually it was an astute, super-well-informed geneticist who delivered the ultimate bad-news blow to the Sarkar family — that their beautiful boy Carter (almost 4 at the time) has Sanfilippo Syndrome. “He’s the strongest kid I know”, she says.  Jennifer Sarkar with her kids, Carter ("C-Money") and Sophia Jennifer Sarkar is a lifelong Los Angeles (California) girl, born and raised and still living there today with her family of 4. She had professional dreams and ambitions of her own many years ago - becoming a nurse, or maybe even a lawyer - and ultimately becoming a mom to (healthy) children. But like a lot of special needs families - and especially mothers - those dreams sometimes get seriously derailed when your nightmare scenario (unhealthy child with a terminal, life-shortening illness) becomes a reality. And that reality meant the Sarkar family needed Jennifer home with Carter, while her husband Samir pursued his dream to build and run a business that now allows kids everywhere to play sports and learn the important lessons of teamwork and sportsmanship. Since then, Jennifer has been essentially Carter’s “right arm” throughout his heroic journey as a Sanfilippo warrior - fighting a whole slew of health challenges and other terrifying experiences. She even home-schools him - almost unheard of for Sanfilippo families (it's exhausting!) - because the reality is that Carter is such an elopement risk that it would take at least two individual aides in the classroom to be able to assist him AND prevent him running out the doors of the school at any time. She’s pretty much half-nocturnal at this point in her life, as her son’s bedtime now varies from anywhere between midnight and 7AM. Yes, 7AM. But no matter how sleep deprived she may be on any given day, Jennifer is always ready, willing and able to help any other Sanfilippo parent out there who needs her advice and guidance. A few other fun facts about Jennifer:
To follow Jennifer on TikTok, go to: https://www.tiktok.com/@carterschallenge. To check out the “Saving Carter” video (produced by the Cure Sanfilippo Foundation) - which has raised over $1 million in the fight to cure Sanfilippo Syndrome - please click here: www.savingcarter.com. To learn more about the Cure Sanfilippo Foundation, click here: www.curesff.org To watch a fun, lighthearted music video that the Sarkar family created a few years back that explains Sanfilippo Syndrome, click here: youtu.be/looggQOYK1s. It was a pleasure and privilege being able to talk to Jennifer and share her story, and we at the Sanfilippo Project look forward to continuing our conversation with Jennifer and collaborating with her in the months ahead as we continue to build out and expand our platform and ultimately share more of our stories with the world... Click below to hear Jennifer share hers. A couple years ago, Carter had a huge bleeding-out episode and we almost lost him" - Sanfilippo medical mama Jennifer Sarkar  Carter "C-Money" Sarkar, Sanfilippo warrior  "I love this man so much!" - Jennifer, talking about husband Samir  Australian native Megan Maack is the mother of 2 children with Sanfilippo Syndrome. She's also the CEO and founder of Childhood Dementia Initiative (CDI), an organization launched in 2020 that focuses on representing childhood dementia as a collective - rather than 70+ separate/isolated genetic disorders - to help drive therapeutic innovation and ultimately improve the outcomes for children with dementia across the world.  During our conversation with Megan earlier this year, we asked her about collaboration efforts (if any) that currently exist between the adult- and childhood dementia communities. She said that she's very pleasantly surprised at the level of engagement and support that she and her organization have received so far from the adult-onset community - particularly from Dementia Australia, which is one of Australia's largest adult-dementia organizations representing the 400,000+ Australians living with dementia. Megan pointed out that even though the underlying root causes for adult- and childhood dementia are generally quite different and unique (for a myriad of reasons), there is undeniably plenty of opportunity for collaboration and joint advocacy across the dementia communities in the years ahead - and those collaboration efforts are now firmly underway. Furthermore, because all types of dementia - both adult- and childhood - ultimately target the brain, there's a high likelihood that any therapeutic solutions or even delivery mechanisms that demonstrates success or advancement for one type of dementia will have crossover scientific benefits for many other types of dementia as well. Click below for the 2-minute clip. I've actually been overwhelmingly supported by the adult dementia community" Back when my son was 5 years old, we took him for genetic testing, to hopefully get some answers on what was going on. But there were no red flags at the time, and there was no diagnosis. Then we went back years later (when he was 10), at which point they did come back with a Sanfilippo Syndrome (type C) diagnosis. Why didn't they catch it the first round? A Duke scientist explains.  Dr. Sage Arbor (PhD) is a biochemist at Duke University, and he also happens to be the author's former college roommate and close friend. He may not be a geneticist, but he certainly knows a heck of a lot more about this stuff than I do, which is why I wanted to pick his brain. Sage theorized that the "false negative" test result at the time may have been because of the the specific testing procedure used. I was confused. But he then explained to me that there are two common ways of genetic sequencing that are generally performed during these genetic testing procedures - one is called the "microchip" method (cheaper / doesn't catch everything); the other method is the classical genetic sequencing (more expensive / more accurate). The main problem with the microchip method, he went on, is that if the test does not happen to include the exact genetic defect that the particular patient has, then the test will miss it - thus, the greater likelihood of a "false negative" test result. The tests are better today than they were back then, he said, so hopefully the false negatives have dropped over that time as well. Check out this clip (below) where Sage breaks it all down for us... a sanfilippo/mps doctor from children's hospital of philadelphia (chop) explains her role11/21/2023  "What we do is we make sure we are thinking about all the different organ systems within the body that can be affected by these diseases - from head to toe - and that we're doing everything we possibly can to optimize outcomes for our patients." -- Dr. Rebecca Ahrens, metabolic physician scientist at Children's Hospital of Philadelphia's lysosomal storage diseases unit (Her patients include children affected by Sanfilippo Syndrome). |
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