My husband Steve was diagnosed with Mitochondrial Myopathy in 2002 (about a year after the onset of his symptoms). Although it seems that everyone has a slightly to extremely different experience with a mitochondrial disease, the UMDF helped us know we were not alone. They also helped our friends and family have a resource to information. We even used their information to help put this disease into "english" for Social Security disability. I lost Steve 2 years ago (10 1/2 years after onset). I'm grateful for every moment I had with him and to the UMDF for helping us know we were not fighting alone. I donate in memory of my wonderful best friend. Miss you baby...everyday.
Review from The Pittsburgh Foundation
Hello ,i am from india.my son is 1 year old now.he was diagnosed with leigh's disease when he was 4 monyh old.shortly after that he stopped crying,smiling and recognizing us.for two months after that he was on thiamine iv and he had lot of pricks .we made friends with many parents whose babies were in same coondition.now we arre looking forward to go for trial,but molecular diagnosis is neede we dont have that.me and all others around the globbe pray that some medicine will be developed by some ome around the globe to save little ones from endless suffering
Review from The Pittsburgh Foundation
My daughter Carly was diagnosed with a Mitochondrial Disease when she was 5 years old. She will be 17 this summer and without The Mitochondrial Disease Foundation (UMDF) and their personal touch her life would have been very different. Every day I live with a bit of fear that if she catches the flu or a bug of some sort will she wind up in the hospital. I wonder will her body go into overdrive trying to heal itself and in the end wind up hurting itself because the mitochondria are not strong enough. Will they stop working in some of her cells causing a multi organ shut down? Will she wind up in a wheel chair or even worse no longer with us!
The mitochondria are the engines to every cell in your body accept for red blood cells. In simple terms to explain the disease I can use a simple analogy. If your car engine is not working then your car gets no energy and it cannot move. If the mitochondrial are sick or not working then the cell it is in won't move either. Make the mitochondria healthy and the cell works. Fix the engine and the car moves. There are plenty of mechanics with knowledge to fix the car! I wish I could say there were plenty of doctors and knowledge to fix mitochondria. This orphan disease, as it is referred to today, once understood will be the healer of most major diseases.
What makes UMDF different? It is how they approach the medical community, the patients, their families, and anyone else that this disease touches. Their mission statement says it all:
“Our 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 staff at UMDF in Pittsburgh PA lives this statement. The best way to exemplify this is to discuss their annual symposium. It not only brings the medical and research communities from around the world together, but also the affected community and their families. They hand out grants to researchers looking to find the who, what, why, where, and when answers we will need to find a cure. They give awards to researches, volunteers, and those afflicted, to let them know how important they all are and to bring a sense of movement, compassion, and hope for all who understand they true meaning of this disease.
At this convention the medical community from around the world meets and discusses their current findings. They educated others in the field looking to gain knowledge and understanding of the disease. The affected and their families also meet to learn what has been discovered, to hear what has changed that may make their daily lives a little easier, to make new friends that understand what they are going through. To support each other! I have met children whose bodies where failing them, who are no longer with us today! These same children are comforting the newly afflicted who have no understanding making lifelong friends even if their lives may only last another year.
NONE of this happens without UMDF! This organizations staff from the receptionist to the CEO lives and breathes for these patients, their families, and the hope of a cure. They work countless hours not because they are affected but because they believe in finding a cure, helping the affected and their families, making a difference! They all would be happy to be out of a job tomorrow as long as they had accomplished their mutual goal of finding ac cure!
UMDF is as grass roots as you get and they are going to change the world. I believe all of us working for this disease will sit back in 50 years from now and say to ourselves I MADE A DIFFERENCE. I helped in my small way find the cure that became THE CURE! The cure for Alzheimer’s, Parkinson’s, Heart Disease, The list is endless. Today they are laying the ground work to financially raise money through a national walk campaign. They have bills in Congress (H.R. 3502) and the Senate (S 2858) that need to pass so we can move forward with much needed research and government funding! They have set a course that is fiscally and morally responsible and positive.
If you are going to recognize give an award, or even better give funding I believe in my heart of hearts this is the organization that has earned it! If we can understand how to heal the sick or dying engine to our cells we can help a lot of people become and stay healthy. We can help millions live much longer, less painful lives!
Thank you for your consideration!
Humbly Submitted 12/27/2010
Robert L Platt