Dear Friends and Family,
We are so humbled by the outpour of texts, emails, calls, and social media love you have shown over the last few days. The energy and spirit you brought to NYC on marathon day carried us through 26.2 miles. We had an amazing race day — thanks to you! While we trained for this race, it was your constant support, enthusiasm, and love that gave us that extra boost to run happy.
As we set out to take our place on the Verrazano Bridge with bright blue skies above and New York, New York playing on the speakers, we had a good feeling this day was ours. We looked over at one another with our hands squeezed tight, tears in our eyes,, and embraced — for Leo.
Thank you to all of our cheerleaders who showed up numerous times along the route. Big shout out to our HOOSIER crew, and Irvington friends who made their presence known! And for the morning texts that came pouring in from our amazing support from afar!
Thank you to our rockstar family who traveled the boroughs to give us energy, strength and hugs along the way. Having our kids watch their mommies run was so special. The 7th mile hugout in Brooklyn and then again at mile 18th in Manhattan will be cherished memories. ❤️
We recieved our medals proudly, but its Deborah and Antoine who are the true warriors. We love you both and will to stand with you to fight for Leo.
From the bottom of our hearts, thank you for the love and support along the way and your donations to INAD. We are forever grateful. We all did it for Leo!
Love and kisses,
Amy and Sarah
Dear Friends and Family,
We are one week away from the NYC marathon! On Sunday, November 3rd at 10:35am, we will begin our climb over the Verrazano Bridge side by side. While our training runs were not done together, we followed the same plan, and ran the same countless hours to get our bodies and minds ready for 26.2. And on the longer training runs it was the thought of Leo's infectious smile and laugh that gave us strength to push through.
We are beyond grateful for your contributions thus far as we have raised $12,000 for Leo! We can’t thank you enough for the continued encouragement, and love you have shown us over this journey. And a huge shout out to our supportive running buddies! Thank you ALL from the bottom of our hearts.
While the marathon is a small battle, in no way does it compare to the battle Leo and his family are fighting. We will give it our all to see that Leo will one day be able to walk and talk. With the money raised, our kisses, or bisous as they say in French, will help make this situation a little bit better for Léo and his family and hopefully help us kiss INAD goodbye.
We would love to see your faces as we run through NYC! For those of you who live locally or anyone who wants to track us while we run here are some logistics to note:
The best way to track us is to download the TCSNYC Marathon App.
Our bib numbers: Sarah Weiss 37308 and Amy Sussman 39497
Our start time: 10:35 AM
Our family will be in Brooklyn near Mile 7, and again in Manhattan near Mile 18 and 23.
We will be wearing black tees and red shorts!
We can’t wait to see many of you next Sunday! Please show support with signs so we can find you and please post on Instagram @bisousforleo @debsbd
Lots of Bisous to you all!
Amy and Sarah
To make a donation: https://www.crowdrise.com/o/en/campaign/bisous-for-leo
Dearest Friends and Family,
In just 12 short weeks, we will run the NYC marathon. OMG!! This is a special race for us for many reasons. Our first marathon. And to know us, we will do so side by side, all 26.2 miles of NYC pavement. We’ll smile, we’ll laugh, we’ll sweat, we’ll ask each other countless times, “Doing okay?” And our twin bond will carry us through the finish line. Together.
But more so, we are running for our best friend Deborah’s son, Leo. We are running to raise money in hopes of finding a cure for INAD (Infantile Neuroaxonal Dystrophy), a devastating disease he was diagnosed with last year. We are running to raise awareness. We are running to help grant Leo the life he deserves. We are running because we love Deborah, and in good times and bad times, we will always be by her side. We are running because in New York City dreams are made. We are running, towards a goal. We are running for Leo. #BisousforLeo is our battle cry.
We hope to inspire you to come on this journey with us as we run our first marathon and to kiss INAD goodbye.
Léo was developing like a typical child well into his first year, but soon after, Deborah and her husband, Antoine, noticed a developmental regression. After much testing, Leo was diagnosed with INAD. Eventually, Leo will lose all acquired skills including mental and cognitive abilities, as seen in Alzheimer's, and physical abilities, as seen in ALS (Lou Gehrig’s disease), resulting in his death likely before he's ten years old. While there are currently no known treatments or cures, we need your help to change that, not only for Léo but for other children diagnosed with this devastating disease. A common question asked is why is it important to fund such a rare disease? Further understanding of INAD will help to develop new treatments and, ultimately, a cure for some forms of Parkinson’s Disease, Alzheimer’s, and Lewy Body Dementia. There have been numerous studies that address the link between INAD (PLA2G6 mutation) and these other neurodegenerative diseases. And these neurodegenerative diseases impact 50 plus million people around the world!
Learning of Leo’s diagnosis was heartbreaking. Through the tears we saw Deborah and Antoine’s hope, determination and relentless commitment to find a cure to save their son’s life. With incredible support from family and friends, they created the Bisous for Leo fundraiser for the INADcure Foundation. The INADcure Foundation is the only U.S.-based nonprofit dedicated to the INAD community. It was formed to fund scientific research for treatments and a cure for INAD and other forms of PLA2G6-related neurodegeneration (PLAN). The Foundation works to identify and fund the most promising INAD research projects, including the work being carried out at Dr. Kotzbauer's lab.
Deborah and Antoine have seen Leo’s mobility decline over the last year. He is unable to walk and talk, and no longer able to sit up without support. This is where we come in and ask for your help. On November 3rd we will run our hearts out in the NYC Marathon with the sole purpose to help save Leo’s life. Deborah has been a loyal, devoted, and loving friend to us for 33 years, and we are standing by her side to help her find a cure for Leo.
With the money raised, our kisses, or bisous as they say in French, will help make this situation a little bit better for Léo and his family and will hopefully help us kiss INAD goodbye. Each mile we run, we are asking for your support to help us reach our goal of $26,200.
Thank you from the bottom of our hearts.
Bisous, Amy and Sarah