My Video for Day without Starbucks for Sebastien
My video to help raise money for "Day Without Starbucks for Sebastien" . Sebastien is my friend. He has MELAS, a mitochondrial disease that is hurting him. Please help.
Sebastien’s Smile
Sebastien's Smile was created for the sole purpose of raising awareness for Mitochondrial diseases which affect the Setin's son Sebastien.
Henry’s video for his friend Sebastien, please help by sharing
Thursday Henry decided he wanted to write something to help his friend. We decided to video the process, as you can see, typing one letter at a time is a very long and arduous process. It took Henry hours to type and edit that paragraph. It was hard and Henry decided to not to share the parts that were too emotional. Sebastien is one of Henry's best friends, he loves him dearly and he has watched his body get weaker and weaker each day. I am so proud of H for writing this, it was very, very hard for a
Everything’s fine, he’s doing great and other half-truths
Writing about Sebastien and the Setins for One Day without Starbucks for Sebastien and Mitochondrial Disorders, made me think about how difficult it can be to talk about your child's very serious medical issues, even with good friends. I have many dear friends who have children that are currently living with or have had life threatening issues. Every single one of those kids and their families, make it look easy. So easy, in fact, that some people don't realize how hard it can be for many kids - going to a million doctors appointments, the surgeries, not feeling well. Often, it's hard
One Day without Starbucks for Sebastien and Mitochondrial Disorders
Sebastien is an 11 year old boy, who likes to do things any other 11 year old boy likes to do- play video games, watch sports on tv (especially his favorite player, Lebron James), and play baseball.
The Setin Family and The Foundation for Mitochondrial Medicine
Sandra and Christophe Setin are parents to 3 great kids, their oldest, Sebastien, was diagnosed with MELAS when he was 3 years old, he is now 11. Sandra is on the Board of FMM, the Foundation for Mitochondrial Medicine and The Pepin Academies. Sandra and Christophe have created a spice, Chef Jean-Christophe's Provencal Meat and Poultry Rub to raise awareness and funds for a much needed cure for mitochondrial diseases. ALL profits go directly to research through The Foundation for Mitochondrial Medicine. Their spice is delicious, Christophe may be the trained chef, but Sandra is also a fabulous cook. Check out their
Mitochondrial Disease: Jeans for Genes
Many of us struggle with not knowing how we can make an impact on Rare Disease. Whether we are faced with the day-to-day difficulties of a rare disease itself, or we are passerby’s watching others’ demanding fight – many of us find ourselves scratching o
Foundation for Mitochondrial Medicine
The Foundation for Mitochondrial Medicine pledges to support the development of the most promising mitochondrial disease research and treatments of the many forms of mitochondrial dysfunction. Formed in 2005 and renamed in 2010, their Atlanta-based non-profit organization financially supports the first FDA-approved drug treatments that began in early 2010. Stated simply: they're funding the cures. The foundation's stewards and founders are parents of patients and medical experts. The Foundation for Mitochondrial Medicine was created to accelerate the development of the most viable mitochondrial disease treatments and therapies.
The United Mitochondrial Disease Foundation
The UMDF's mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families. The UMDF's website provides the latest news and information about issues relating to mitochondrial disease research and information. The UMDF also holds an annual international symposium that brings together the best physicians and researchers for patients and family members to gain valuable information. The UMDF also provides information about local fundraisers and educational programs. The UMDF advocates on the national level and empowers members to advocate on the local level regarding issues of medical
