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United Mitochondrial Disease Foundation Inc.
December 27, 2010

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

The Great!

I've personally experienced the results of this organization in...

my own life over many years of involvment both locally and nationally.

Ways to make it better...

If I had to make changes to this organization, I would...

find a way to get them unlimited funding so they can contune to fund research and support iividuals and their families affected by this diease!

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2010

MY ROLE:
Volunteer & I am helping advance the cause!.

URJ Kutz Camp
October 29, 2009

There is not enough time, words, or anectdotea to express the meaning that Kutz put into my life and anyone I know who had the privelage to be a part of this great institution. It made me into the Jew that I am today, fostered my love for my religion and the desire to pass this understanding on to my children. I met icredible peopl who thru face book today i am excited to hear from and get caught back up! Anyone who wants there children to learn about there judaic place in the world, meet incredible people, and fall in love with life and those that you are privelgaed to encounter throughout that life this is a great place to startt off on that wonderful journey!

The Great!

I've personally experienced the results of this organization in...

learning how to be independent on my own, finding a deeper appreciation for my heritage that has stayed with me even until this day. Made unbealivable friends that i still stay in tocuh with 20+ years later

More feedback

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

1997

MY ROLE:
Client Served & I was a camper for four years and staff for two years.