The MSA Coalition is thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.
The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.
We’re dedicated to helping people with multiple system atrophy in their lives. With this partnership, we’ll be able to help even more people.
We encourage you to submit a story to The Mighty and make your voice heard.
We watched our mothers and fathers courageously battle this unforgiving disease. We need to continue to courageously fight this disease in our loved ones honor; fight for funding to help researchers find answers and continue to support those who are impacted. And the best part of being a small army, is that every person can make a huge difference.
All children of MSA Warriors: Please create a fundraiser page NOW as part of the MSA Coalition’s Holiday Challenge Campaign, it takes just 5 minutes! Click “Fundraise for this Campaign” here:
Upload a few photos and write a short paragraph about your parent and their struggle. Then take a few minutes over the next 4 weeks to share the link to your page with your contacts on social media and in email. Every donation, no matter the amount, makes an impact. We need you to help continue the fight. Because, to quote my courageous mother who fought this disease with all that she had, “MSA can BITE ME!”
My mom was a kick ass fundraiser! She loved calling people and asking for money for a cause she was passionate about. Our passionate cause now is to help the MSA Coalition “Find a cure for MSA and help those currently struggling”. Now it’s our turn to give back to my mom… to countless moms and dads who have fought the good fight and to those who are now fighting – our MSA Warriors!
Mom fought this evil disease up to the end, refusing to give up hope that the doctors were only 80% certain that Multiple System Atrophy was the diagnosis (definitive diagnosis can only be made post mortem). She always said, “someone has to be in that 20% group, why not me.” While we all held out hope that she was right, unfortunately that was not the case. That is one of the hardest parts of this disease: the diagnosis. It can take years to diagnose, once all other potential diagnoses have been ruled out…and you can chase that diagnosis all over the world, but in the end, there is no treatment, no cure, nothing to slow down the progression…and this is where YOU come in.
The Multiple System Atrophy Coalition is LEADING THE FIGHT TO CURE MULTIPLE SYSTEM ATROPHY while providing COMPASSIONATE SUPPORT and INFORMATIVE RESOURCES to benefit families affected by this serious, progressively disabling, neurodegenerative disease.
Any amount helps fund research that could eventually lead to a treatment and ultimately a CURE!
And it wouldn’t be a Deb Duffy plea without this phrase:
Watch this 20 minute prerecorded webinar on why and how to raise money for the Multiple System Atrophy Coalition. The webinar includes easy step by step directions on setting up a fundraiser and offers practical tips to make your campaign a great success.
by Cyndi Hungerford (in memory of Mark J. Hungerford)
WE NEED YOUR HELP TO REACH OUR GOAL! and to Defeat Multiple System Atrophy!
Our story began with odd symptoms in 2008 when my husband Mark thought he was walking funny in his boots then on a motorcycle run he nearly lost control of his bike going around a corner. Knowing something was wrong, we started seeing doctors. Doctor after doctor, test after test we were told there was nothing wrong. Finally, after being very persistant for an answer we got a diagnosis of Cerebellum Ataxia. Knowing we could live with that we would just have to adjust our lives to handle the condition.
Then he started developing new symptoms. He became very dizzy, had double and blurred vision, digestion problems, swallowing problems, dysfunctional bladder and then ended up with a permanent Foley catheter. He lost his ability to walk, talk, write & had constant headaches. Pain in his legs all the time on a daily basis with severe edema! Low blood pressure that was hard to regulate causing him to nearly pass out upon standing, then severely high blood pressure, difficulty breathing, severe Sleep Apnea causing him to stop breathing 19-24 times an hour and the list goes on and on.
Finally his doctor said there was something else going on so there were more tests and then they found it in his brain scan. The doctor explained to us the Cerebellum in the brain should be thick & dense, about the size of a large grapefruit, but this disease causes it to shrink and at his diagnosis it was the size of a 50 cent piece causing his body to fill the empty space in his head with spinal fluid making his head feel sloshy all the time. He couldn’t handle sudden movements at all. He had MSA, Multiple System Atrophy, a cruel degenerative disease with NO CURE!!! We wanted a second opinion so we went to Mayo Clinic in Rochester MN. After 2 days of nonstop tests we got the same news… MSA!!! In the spring of 2013 our whole world changed with this diagnosis!!!
We were devastated!! My husband was a strong man with his whole life ahead of him yet he lost everything, his hopes, his dreams, his dignity. He was completely dependent on me. I cared for him every day 24/7 until October 18th, 2016 when he made his final home in Heaven. We need answers about how to find this earlier and understand it so we can know how to treat it and STOP THIS DISEASE!!
We need a cure for multiple system atrophy!!!!
Please continue reading about what we are hoping for during the MSA Coalition’s Holiday Challenge Fundraising Campaign. PLEASE DONATE TO CURE Multiple System Atrophy!!!! PLEASE HELP US SO WE DON’T LOSE MORE LOVED ONES TO THIS DISEASE… IT COULD EASILY BE YOU OR A LOVED ONE… PLEASE HELP!!!! ANY DONATION COUNTS… IT ALL HELPS!!
Janell, my loving wife of over 51 years, is ill with Multiple System Atrophy (MSA). As I write this, Janell is in hospice care.
When I think of MSA, relentless is the first thing that comes to mind. The patient may fight MSA, but it has never failed to vanquish its victims. Why is that? Probably because it is a very rare progressive neurodegenerative disease that afflicts only about 5 in 100,000 people. Make no mistake, MSA is a death sentence. But, before it takes our loved ones, it robs them of most every possible function for daily living we take for granted. It leaves them trapped in a body they can no longer control but they are cruelly aware of their continual decline.
My goal is to raise awareness of MSA and encourage donations for research to identify a cause and finding a cure.
We do not have a well known public figure afflicted with the misery of MSA. Consequently, MSA does not have the celebrity panache of thousands of people making donations in the fight against it. I am hoping with the help of our family and friends, we can change that.
All of us touched by MSA must join forces in the quest to find a cure. One easy way you can help today is to create your own tribute fundraiser page to honor your loved one. Just click “Fundraise for this Campaign” to Join the Team Now or reach out to the MSA Coalition and they will create your page for you. Email firstname.lastname@example.org or call 866-737-5999