MITO HOPE and HELP
I am Passionately driven by my love for my children, who all have mitochondrial disease, to offer hope and help to others affected by MITO.
Despite the fact that my children displayed multiple problems from birth, it took our family 19 years of daily searching to finally be properly diagnosed with mitochondrial disease in 2001. After receiving the diagnosis it was yet another several years before we had definitive testing which documented MITO. In July of 2010, my oldest child, Randi, lost her very brave life-long battle with MITO.
September 2010, MITO HOPE and HELP was founded so that I could fulfill Randi's dream. Randi and I envisioned a day when everyone living with a mitochondrial disease would have specialized, coordinated medical care and support services that are crucial to their well being. Randi imagined a special hospital, similar to St. Jude, just for Mito. There would be a combined effort of researchers and the best specialists, each trained and knowledgeable about Mitochondrial diseases, all working together at one facility offering HOPE for a CURE and HELP for ALL!
While working towards this ultimate goal Mito Hope and Help established an endowment fund with Albany Med., specifically created to hire a mid level provider to work with Dr. Adams providing appropriate medical care for "MITO" patients of all ages.While working towards this ultimate goal Mito Hope and Help established an endowment fund with Albany Med., specifically created to hire a mid level provider to work with Dr. Adams providing appropriate medical care for "MITO" patients of all ages.
MITO HOPE and HELP is based in Warrensburg, N.Y. but we have active members from many areas of Upstate and Northern NY. Due to a number of factors, MITO itself and the geographical distances between our MITO community it's impractical to meet physically on a regular basis. Therefore, input garnered via phone and or emails is noted within the monthly update page on our website. Our NEWS and EVENTS pages are also updated regularly to reflect current efforts.
In January 2011 we became a sponsored program of NYSARC Inc., Warren Washington and Albany Counties Chapters, to aid us in our mission.
MORE ABOUT WWAARC
In 2012 Warren and Washington Counties Chapter merged with the Albany County chapter of NYSARC Inc.
This was very beneficial to our MITO Community because the majority of our members reside in Warren and Albany counties. Also, Albany Medical Center is located in Albany County.
WWARC is celebrating their 50 year anniversary!