My husband, John Bischel, suffered from a very rare disease called Multiple System Atrophy (MSA), and sadly passed on in 2002.
John was a child psychiatrist & had been a vital part of the community until MSA took away his ability to function as a normal human being. The public sector was where he worked & where he felt he could do the most good for the entire community. He loved his work & was good at it.
The lack of awareness about Multiple System Atrophy has hindered much needed research funding.
Multiple System Atrophy/MSA has no cure. There are currently no treatments to delay the progress of the neurodegeneration in the brain. The only thing we can do is to medicate patients to make them as comfortable as possible and help them through their journey with as much love and dignity as we can.
Thanks to the pioneering work of the Multiple System Atrophy Coalition, word about Multiple System Atrophy is now spreading, researchers are beginning to take more of an interest and connections have been made among families coping with this disease.
The Multiple System Atrophy Coalition has established the Multiple System Atrophy Research Fund to support finding the cause of Multiple System Atrophy and eventually a cure.
I AM ASKING FOR YOUR SUPPORT for this research fund to get more money into the hands of MSA researchers as soon as possible!
The Multiple System Atrophy Coalition is run entirely by volunteers and offers the following:
- Multiple System Atrophy Research Fund to find a cause and cure for MSA
- Support for Multiple System Atrophy patients and caregivers through their website and toll free MSA information hotline 1-866-737-5999
- Annual conference for MSA patients and their families
- Education to physicians, healthcare providers and patients/caregivers
- MSA Advocacy
To donate, please click the DONATE button. Your generosity is appreciated so much. Thank you!
Find out more about the Multiple System Atrophy Coalition
** The MSA Coalition is a tax-exempt 501(c)3 charitable organization based in the United States devoted entirely to Multiple System Atrophy research, support , advocacy and education .
Pam Bower wrote -
Multiple System Atrophy is a rare, life limiting neurological disease, so rare that most doctors have not even heard of it. For those diagnosed, it is a death sentence. There are no drugs that stop it's relentless progression.
Over the course of 5 to 10 years, victims are robbed of their ability to walk, talk, chew, swallow and breathe, yet until the end their intellect remains intact. Not only are their bodies assaulted, but also their dignity and sense of worth. The stigma of having a rare disease leaves them feeling isolated from their community and even from relatives and friends who don't understand or can't cope with the reality of the disease. Families remain in a constant state of grief as the disease eats away at their loved one.
People diagnosed with cancer are offered tools with which to fight the disease... surgery, radiation, chemotherapy. People diagnosed with Multiple System Atrophy simply have no such tools to fight with. With your help we can change that.
The MSA Coalition has an established Multiple System Atrophy Research Fund to support finding the cause of MSA and eventually a cure. It is the MSA Coalition’s belief that with a small number of MSA patients in the U.S. and globally, a centralized MSA Research Fund is critical to pooling money so the funds can be used in the most effective way possible.
The need for donations has never been more urgent.
As of May 2013 I know of TWO promising clinical research projects which are unable to start accepting MSA patients until their funding needs are met.
The time is now to take action. Please help by donating today.
Please Donate and click on the Create A Fundraising Page button to help me fundraise for this amazing organization.
Thank you for your generous support.
**As a 501(c)3 charity all donations made to the MSA Coalition and the MSA Research Fund are tax deductible for U.S. tax payers.