$2,459.76
200 miles and more for smiles FAST
200 miles and more for smiles
$2,459.76
FAST
200 miles and more for smiles
200 miles and more for smiles

My Story

My niece, Jessy, was born with Angelman Syndrome. Angelman Syndrome, AS, is a rare neuro-genetic disorder and is often confused with cerebral palsy or autism due to some similarities and a lack of awareness of the disease. In AS the main gene, UBE3A, responsible for cognitive development is either missing or altered preventing a child from developing speech, walking, fine motor skills, etc and often causes seizures. Despite limited abilities children typically have an extremely happy and smiling demeanor.

My niece Jessy, is such a sweet and happy soul. She has a mutation of the gene and is able to walk, feed herself, swing, and play on the playground. However, she has very limited speech of about 3 words. She is now 11 years old and loves trains, the water, and her 5-year-old sister dearly. She is quite a good hiker too!
The cool thing with AS is that while the maternal gene of UBE3A is what is impacted we all actually have an additional copy – a paternal UBE3A gene. There has also been a lot of development in the use of viruses to deliver healthy genes to patients and some of you may have heard of these developments with cancer treatments. There is a lot of exciting work being done in genetics today and how we can help people suffering from life changing diseases!
8 years ago I trained for a marathon for the Foundation of Angelman Therapeutics, FAST. FAST works on clinical trials for treatment for AS. This year I have set an ambitious goal of running my first 100 mile race- and if you are going to sign up for one early in the season you mind as well sign up for another one. So my goal is to run two 100 mile races in honor of Jessy and FAST with the Miles for Smiles Team (http://www.miles-for-smiles.org/). My first 100 mile race will be Bighorn 100 in Wyoming on June 15, 2018 and I will finish my goal race at the Bear 100 in Idaho on September 28, 2018. Jessy will be there for the Bear 100 and it will be awesome to share this journey with her. Please join me on this crazy adventure as I strive for not only in my running goals but also in my goal of raising research money for FAST and Angleman Syndrome.

Thank you for reading this and stay posted for updates!
Elise and Jessy McKnight
*all donations are tax deductible with FAST

Team

Team Miles For Smiles

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I’ve created this page because I have an 10 year old daughter, Hayden Grace, with Angelman syndrome (AS). After her diagnosis, I learned about the work of FAST (Foundation for Angelman Syndrome Therapeutics) and the group of parents who give of their time- their blood, sweat and tears- without being paid one dime to help push research forward towards curing AS. I wanted to get involved, do as much as a could because I too wanted to live with the hope that our children could have a bright future... thus, the formation of Team Miles for Smiles in 2011. Over the past 7 years, our over 150 teammates from around the US, Canada, Australia and the world have crossed finish lines of races ranging from a 5K to the Ironman and raised over $150,000 in the process for FAST. Because of recent advancements in the understanding of AS, treatments for this disorder are not only possible, they are probable.Individuals with AS typically have balance issues, motor impairment and debilitating seizures. Some patients never walk. Most do not speak. Despite its often devastating effects, Angelman syndrome is a simple disorder involving only one gene. FAST scientists have already cured AS in the lab using several different approaches. FAST is committed to bringing life-changing treatments for Angelman syndrome to clinical trial within two years – but we need your help. FAST has brought together a multi-disciplined team of more than two-dozen scientists from multiple universities and pharmaceutical companies to join forces on a focused path to a cure. I'm inspired by the breakthroughs being made by FAST, and I want to do my part by raising money to fund clinical trials for Angelman syndrome (AS). FAST researchers know exactly what causes AS and have already cured it in the laboratory. Today, five therapy strategies are in development to treat Angelman syndrome. Your donation to my page helps fund all of them. Please help me support this critical research by clicking the “Give Now” button and donating whatever you can. Every single dollar counts and is appreciated! The more people that know about FAST, the greater their impact, so please also spread the word by sharing my page with your contacts. Since AS is a rare disorder, we truly rely on the support of friends and family members to fund this groundbreaking research. Thank you in advance for your generosity.Their work will change life for people with Angelman syndrome and, potentially, related disorders like autism and Alzheimer’s disease. FAST is the largest non-governmental funder of Angelman syndrome research and the only organization with a detailed plan towards a cure. To learn more about Team Miles for Smiles, to become involved and set a race as a fundraising goal for this amazing organization, or to be partnered with an Angel and their family as part of our Wings to Fly partnership, please visit the Miles for Smiles website at http://www.miles-for-smiles.org/. And if you are looking for a little inspiration to help you start, watch this video of our team highlights: Highlight Video.Thank you and God bless you all.

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Team

Team Miles For Smiles

Blob

I’ve created this page because I have an 10 year old daughter, Hayden Grace, with Angelman syndrome (AS). After her diagnosis, I learned about the work of FAST (Foundation for Angelman Syndrome Therapeutics) and the group of parents who give of their time- their blood, sweat and tears- without being paid one dime to help push research forward towards curing AS. I wanted to get involved, do as much as a could because I too wanted to live with the hope that our children could have a bright future... thus, the formation of Team Miles for Smiles in 2011. Over the past 7 years, our over 150 teammates from around the US, Canada, Australia and the world have crossed finish lines of races ranging from a 5K to the Ironman and raised over $150,000 in the process for FAST. Because of recent advancements in the understanding of AS, treatments for this disorder are not only possible, they are probable.Individuals with AS typically have balance issues, motor impairment and debilitating seizures. Some patients never walk. Most do not speak. Despite its often devastating effects, Angelman syndrome is a simple disorder involving only one gene. FAST scientists have already cured AS in the lab using several different approaches. FAST is committed to bringing life-changing treatments for Angelman syndrome to clinical trial within two years – but we need your help. FAST has brought together a multi-disciplined team of more than two-dozen scientists from multiple universities and pharmaceutical companies to join forces on a focused path to a cure. I'm inspired by the breakthroughs being made by FAST, and I want to do my part by raising money to fund clinical trials for Angelman syndrome (AS). FAST researchers know exactly what causes AS and have already cured it in the laboratory. Today, five therapy strategies are in development to treat Angelman syndrome. Your donation to my page helps fund all of them. Please help me support this critical research by clicking the “Give Now” button and donating whatever you can. Every single dollar counts and is appreciated! The more people that know about FAST, the greater their impact, so please also spread the word by sharing my page with your contacts. Since AS is a rare disorder, we truly rely on the support of friends and family members to fund this groundbreaking research. Thank you in advance for your generosity.Their work will change life for people with Angelman syndrome and, potentially, related disorders like autism and Alzheimer’s disease. FAST is the largest non-governmental funder of Angelman syndrome research and the only organization with a detailed plan towards a cure. To learn more about Team Miles for Smiles, to become involved and set a race as a fundraising goal for this amazing organization, or to be partnered with an Angel and their family as part of our Wings to Fly partnership, please visit the Miles for Smiles website at http://www.miles-for-smiles.org/. And if you are looking for a little inspiration to help you start, watch this video of our team highlights: Highlight Video.Thank you and God bless you all.

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