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Defeat MSA

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Nonprofit Overview

Causes: Health, Specifically Named Diseases Research

Mission: Realizing that much of the current attention is focused on more widely known diseases, Multiple System Atrophy is overlooked. MSA patients are confronted with a dim prognosis and left with few options. The purpose of Defeat MSA is to receive and administer funds: To develop effective treatments to combat the debilitating effects of MSA. To foster promising research in an effort to slow the progress of MSA. To nurture collaborative studies into the underlying causes of MSA. To raise awareness and promote understanding about living with MSA. Defeat MSA aims to increase AWARENESS, help ALLEVIATE disease symptoms and ADVANCE research toward the cure for MSA!

Results: 1) Led fundraising for first full-length feature documentary film about a world champion athlete with Multiple System Atrophy. 2) Sole sponsor of the MSA patient loaner closet for durable medical equipment. 3) Sponsor 2 of the only 3 MSA patient support groups in North America. 4) Sole sponsor of the MSA Shoe, a tool to raise awareness about MSA (www.MSAshoe.org) 5) Participating charity in the Global MSA Research Roadmap 6) Led two successful campaigns to declare March as MSA awareness month on the state level. 7) Participating charity in 3 national and international neurological and rare disease conferences.

Target demographics: people suffering from Multiple System Atrophy.

Direct beneficiaries per year: Many families affected by Multiple System Atrophy throughout the world ...

Geographic areas served: Michigan, United States, International

Programs: 2 Support groups, MSA Durable Medical Equipment Loaner Closet, National Billboard Awareness Campaign, funded research, sponsored two film documentaries

Community Stories

50 Stories from Volunteers, Donors & Supporters

4 Elena F.1

General Member of the Public

Rating: 5

Defeat MSA is a truly powerful organization, giving voice to those affected by this little known, devastating disease. I have watched this grass roots effort grow since the beginning as a work of love and devotion by its founders. Indescribable grief and suffering has been channeled into positive action to help fund research and provide support for others dealing with MSA. It is an important and worthwhile organization and I hope to see it continue to grow and prosper.

Comments ( 1 )

defeatmsa Thank you Elena! We will keep trying to help those that suffer so much from MSA.....

1

General Member of the Public

Rating: 5

I have been my wife’s care giver for many years now it has been a long hard battle. We spent many years trying to get a diagnosis and unfortunately finally get diagnosed with MSA. We then spent a long time not knowing much about the disease or anyone else with the MSA. That all changed when we found Kym. She opened the door to us to the Defeat MSA family of people and support as well as a wealth of information. I hope sometime soon that through the efforts of Defeat MSA and all they do we can soon say we have finally Defeated MSA.

1 suttonc1023

Board Member

Rating: 5

I cannot thank Philip enough for starting this charity and working tirelessly to raise awareness about and supporting those afflicted with Multiple System Atrophy. My mom has met many other patients through Defeat MSA's support groups and we look forward to meeting and helping others cope with this awful disease.

Previous Stories
4

Client Served

Rating: 5

This wonderful charity has made my mom and I feel less alone as she battles this rare and devastating neurological disease. We have met many others who are fighting to understand and learning how to cope with this awful diagnosis. The support group meetings are so very helpful! Thank you Defeat MSA for spreading awareness and bringing patients and their families together! I look forward to the next fundraiser and patient outreach meetings!!

1

Client Served

Rating: 5

My husband was diagnosed in 2016 with probable MSA-C. He was orginally diagnosed with Sporatic Cerebellar Ataxia. Defeat MSA has the only Loaner Closet available for MSA patients to obtain medical equipment to help patients such as my husband. We were able to obtain a Hoyer Lift to assist my husband.

1 Sandra B.1

Donor

Rating: 5

My husband passed away 5 years ago from the devastating disease MSA. Since that time I have become familiar with Defeat MSA and the important work they do. They run the only loaner closet for MSA patients and they have created a wonderful online tool to connect patients who would otherwise have no access to support groups. Great work, great charity!

2

General Member of the Public

Rating: 5

My beautiful Dad passed away from this Monster of a disease at the age 67 years old it was the most frustrating time to watch someone you love suffer the way he did and there is absolutely nothing you can do to help them. The work that Defeat MSA do is amazing. I am currently holding the shoe in Australia to help bring so much needed Awareness about MSA. Defeat MSA is an organisation that I have so much respect for and hopefully together we can one day find a cure for this CRUEL disease.

1 Kym_

Board Member

Rating: 5

My mom was diagnosed with MSA-c in late 2009 and lost her battle nov. 2012. Defeat MSA and it’s board members all have a direct link to Multiple System Atrophy which to me is very important in a non profit. They also have the MSA shoe that travels the world helping to raise awareness. I am very thankful for defeat MSA and all the awareness it brings to this horrible disease. In memory of my mom, Connie Lopez

1

General Member of the Public

Rating: 5

Defeat MSA has assisted patients and families with this fatal disease. They've played a critical part in educating health care/medical professionals. MSA continues to strive to raise a greater public awareness for this disease. The MSA community is better for having an organization such as Defeat MSA advocating for them.

1 Mike S.4

General Member of the Public

Rating: 5

I was sick for 7 years before being diagnosed with MSA finally. It had now been 4 years since I was diagnosed. I search internet for groups and to gain knowledge about MSA and found this sight where fellow patients and care givers can communicate back and forth about what they are going through older patients help newly diagnosed patients understand and comfort each other. It has been a huge blessing too have this site People on here are great Nd people running make it a great sight that no one puts you down Everyone wants to help and console each other

1

Volunteer

Rating: 5

Defeat MSA has been an integral part in helping our family cope with this terrible disease. With the help of Defeat MSA we look forward to advancing the knowledge of this disease.

1

Donor

Rating: 5

I have supported Defeat MSA in the past. They are all volunteers and have no paid staff at all . Most importantly, they are personally connected to MSA. My nephew died of it. I know the organization's founder had a brother die of MSA. Having people in a group with a biological connection is very important to me. With a lot of other charities, the people running the organization have no connection to the disease or charity.

1

Volunteer

Rating: 5

Defeat MSA has raised a good deal of awareness about multiple system atrophy. They have taken on a role of helping to support patients too, through their support group too. I hope they continue to grow and develop into a successful charity. I am happy to contribute to them, because I know where the money will go, to a good cause!

Previous Stories
1

Donor

Rating: 5

Defeat MSA has raised a good deal of awareness about multiple system atrophy. They have taken on a role of helping to support patients too, through their support group too. I hope they continue to grow and develop into a successful charity. I am happy to contribute to them, because I know where the money will go, to a good cause!

Client Served

Rating: 5

Great group trying to bring awareness to MSA. Involving patients, healthcare professionals and caregivers, they provide support and education through focus groups, meetings and their website. A very dedicated group who have helped many people cope with this little known and debilitating disease.

Volunteer

Rating: 5

This charity helps people afflicted with this debilitating disease through the use of shared equipment and of course the traveling shoe.

General Member of the Public

Rating: 5

This non profit is doing stellar work in this field. They are raising awareness amongst the general public regarding a devastating neurological disorder with their MSA shoe (which has literally travelled the world and been a great ambassador for this cause!). The MSA closet that helps those who need access to certain equipment is a pretty unique concept too. Keep up the good work!

General Member of the Public

Rating: 5


our efforts to increase awareness via the MSA shoe;
the patient support group - One of only three that are only focused on MSA in the country
our MSA equipment closet - The only one in North America
patient advocacy (we got March declared as msa Awareness Month here & helped in several states increase awareness

General Member of the Public

Rating: 5

The MSA Loaner Closet is an amazing solution to help with the many equipment needs of those who suffer from MSA.
My husband received a donated electric wheelchair from another person with MSA who could no longer could use it.
It has completely enhanced his mobility and improved his quality of life. Insurance would not cover the equipment because we had already utilized our allotment, as this disease progresses so quickly.
I intend to donate the wheelchair back to the charity when we are finished with it.

General Member of the Public

Rating: 5

Defeat MSA is an amazing organization striving to provide information and increase awareness of this debilitating disease. Through patient advocacy, support groups and possessing the only MSA equipment closet in North America, Defeat MSA is providing unparalleled benefits to those affected by MSA. Through their own experiences at the hands of MSA, the founders of this organization have converted the pain caused into positive action by being forces of change and enacting positive action to raise funding to support research and help those dealing with the consequences of MSA. Defeat MSA is truly making a difference for many people and I hope it will continue to thrive and ultimately succeed in defeating MSA.

General Member of the Public

Rating: 5

I watched my lifelong best friend suffer from this debilitating disease for 6 years. Ultimately, he was trapped inside his body. His mind was perfect, yet his body started shutting down piece by piece until he was paralyzed, couldn't eat, speak, or any of the normal activities that we do. It was heartbreaking. This nonprofit is for the benefit of the patients, the caregivers, the families and the loved ones who all need such emotional support during this traumatic time. The group members are there for each other, to vent, to cry, to get angry, and to ask questions about things that are happening to the patient to help them cope. This cause has done so much for so many, the MSA Shoe is a wonderful mascot that travels the world to raise awareness for this little known disease. Many famous as well as not famous people have posed with the Shoe. The Loaner Closet is so amazing, people donate their medical equipment such as wheelchairs, shower chairs, etc. to other patients who can't afford to purchase them. This nonprofit is one of only three that are focused on MSA in the US. I have watched this grow into such a helping hand for those in need. Defeat MSA is the example of the true meaning of a great non profit and I truly hope that it is recognized as such.

General Member of the Public

Rating: 5

Wonderful charity raising awareness world wide! The people who run this charity have real heart, commitment, and passion! Please help support a truly wonderful cause!

General Member of the Public

Rating: 5

Defeat MSA is a very suppportive organization that helps in many ways. Our life has been taken over by this horrible and mostly unknown disease. So, as part of our MSA journey, we contacted Defeat MSA to become an MSA shoe Awareness Ambassador. We travelled Eastern Canada with the MSA shoe creating awareness and making memories!
We feel stronger as a family, by helping in our small way.

We can't find a cure for a disease, that no one knows about. First step is awareness, second step is a cure!

Thank you Defeat MSA for guiding us, supporting us, and allowing us the honour to carry the MSA shoe on our journey.


Steve and Beth Foster