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Defeat MSA Alliance: Defeat Multiple System Atrophy

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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 Alliance 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 Alliance 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 9 national and international neurological and rare disease conferences. 8) Developed and Operate World's first Online Support and Research Platform: www.BrainPatient.org

Target demographics: People suffering from Multiple System Atrophy and their caregivers

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

Geographic areas served: United States, International

Programs: 2 Support groups, MSA Durable Medical Equipment Loaner Closet, National Billboard Awareness Campaign, funded research, sponsored two film documentaries, operate the global online support hub with downloadable apps

Community Stories

81 Stories from Volunteers, Donors & Supporters

5 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.....

Client Served

Rating: 5

Although having had a nursing career spanning four decades, I had never heard of MSA until given this diagnosis in May 2018. Even now, I have yet to meet a person, face-to-face, who has this diagnosis.

"Defeat MSA" has become my lifeline, providing CONNECTIONS to help maneuver this rare disorder - connections to the loaner closet for medical equipment, connections enabling me to participate in a teleconference with neurologists attending a professional convention, connections to participate in a clinical trial for an MSA drug treatment, and connections with numerous MSA resources around the globe. Most importantly, social media connections, via "Defeat MSA", have helped me tap into MSA patients around the world who have become a wealth of information, as well as, my cherished MSA family.

Without these valuable connections, MSA would be a long, lonely, terrifying journey. Thank you, "Defeat MSA"!

Volunteer

Rating: 5

I was Diagnosed with MSA-C,Dec.17th 2016. I had a medical background but never heard of MSA. I did my research and tried to gain as much knowledge as I could. I reached out to several people, all people posting on MSA sites. Defeat MSA was a place that I felt so comfortable expressing my fears, my bewilderment and being accepted. Phil responds immediately to me questions and offered suggestions as to where I need to go if I have questions that he cannot answer. Though honestly Phil has most answers as his brother pasted with MSA and Phil was his personal caregiver. When his brother passed, Phil made it his live long purpose to help patients, family members and caregivers not only with comfort but to do everything within his power to help fine a possible cure. It did not happen for his brother, as his brother’s progression was very quick. I have had the great honor to speak with Phil several times, he is the most generous caring individual I have had the honor to know. His non profit extends beyond just the Disease. He is going world wide so other people who have no help or a place to share their journey , Phil is opening up the door for them so they are not alone. He also has a loaner closet of special medical equipment that is on loan to any MSA patient who may not have the funds to purchase or inadequate insurance coverage. He also has the MSA shoe that again has traveled the world bringing awareness of MSA. Phil also has the MSA hub where any one can sign up for. That informs you of upcoming seminars, discussions groups etc. I feel that Phil takes a special interest in all of us. We have become like family. For me I know I can turn to him morning, noon and night. For a patient who is dealing with this horrific disease, I cannot think of a greater act of kindness or generosity then Phil Fortier gives us.


undune

Client Served

Rating: 5

I have been diagnosed since 2015 with MSA. I had never heard of MSA before, I was a sponge for information and was determined to find a cure, This website and a hands on developer helped with both goals. I haven’t found that cure yet but I know that every penny raised by this website goes to my cause and one day the funded researchers will find a cure
The developer works tirelessly to make life better for the MSA patient. He developed a global hub where I have met wonderful friends from all over the World. Most of the people I have met have MSA and. it is great to ask them questions about medication or what’s going on in their area of the world Ive learned about current research and relative trials and best of all I have made friends that understand what I am going through, I am not so lonely.
The developer also hosts the MSA loaner closet and I borrowed a u-step walker which is brilliant. I had already invested in a plain walker and strollator which can both fall over with me. I was not comfortable forking out a small fortune for a top of the line walker so I found out I could borrow it from the loaner closet and I will only need it for a year or two, it’s great. I am so glad I found Defeat MSA and the developer Philip. Because Philip’s brother died of MSA, he seems to be really driven and to care.

Mike S.9

Board Member

Rating: 5

This charity does the best job of all MSA charities of actually being there to truly help research and further studies toward a cure than other MSA charities. They are there on a personal level for patients, caregivers, and families who have loss loved ones to this horrible disease. They do better at getting money to research and studies than using money for charity expenses. That led me after 13 year battle with MSA to join in this year to help as patient advocate

Previous Stories
1

Donor

Rating: 5

Being a patient with MSA for 11 years now they welcomed me with open arms. They care about about each individual and their family from the loaner closet, the HUB, MSA shoe, life affirmations, groups for families who have lost loved ones to this dreaded disease working toward common goal of finding a cure. They make everyone’s story important. Recently adding me as a patient advocate was such an honor

General Member of the Public

Rating: 5

Defeat MSA does a wonderful job of making people aware of this horrible disease. So many people do not know what MSA is. Defeat MSA not only offers education, but also heart felt support. They stay on top of any new medical information and tirelessly work with the medical community. I’m so grateful for this organization and all the hard work they’re doing.

1

Client Served

Rating: 5

Defeat MSA is the only nonprofit we found to provide support and education as well being the only loaner closet in North America, provided a Barton chair that makes it possible to easily transport Mom from having to lie in bed to a sit up position. It's efforts to raise awareness and proper diagnosis with the public as well as the medical profession, including doctors is astounding. Defeat MSA does it all. Being all volunteer and seeing what has been accomplished since its inception is nothing short of miraculous. It's also gone global. Being nontechy myself, I don't totally get how but the numbers of those able to be supported and educated has exponentially increased daily by this genius move. I cannot say enough about the integrity of this organization and all it has done for those suffering from this dreadful disease and their family members. God bless you all for all you do. We are all in for DEFEAT MSA!!!

2

General Member of the Public

Rating: 5

Defeat MSA works tirelessly to help those afflicted with this terrible disease. They provide resources, support and education to families, caregivers and patients. Defeat MSA is dedicated to DEFEATING MSA.

Previous Stories
2

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.

2

Client Served

Rating: 5

While witnessing a loved one lose a parent to this viscous disease, I learned about this great organization. DefeatMSA has great resources for patient support and they helped the family out in countless ways. They are an amazing organization with a great mission.

2

General Member of the Public

Rating: 5

I love knowing that all funds donated are used to help find a cure for MSA since all work done is done by volunteers (most, if not all, who have been impacted personally by this devastating disease).

2

Donor

Rating: 5

I first learned about MSA from a friend whose husband died from this terrible disease. Each year during the month of his birthday, she has started an "Eat Cake for Breakfast" tradition to honor him and to raise awareness of MSA. Many donations are made to defeat MSA, to fund research and public awareness. It has been a blessing to all of us!

2

General Member of the Public

Rating: 5

We have a very good friend who lost her husband to MSA and have become involved in the fight and fundraising to help bring a cure to this terrible disease.

2 Sandra B.1

Volunteer

Rating: 5

DefeatMSA is an amazing organization. They put MSA patients at the forefront of every program, project and decision. Run by a small group of dedicated volunteers!

Previous Stories
2

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 Jacqui D.

Volunteer

Rating: 5

This organization is comprised of many passionate, hard-working people who are making a real difference in raising awareness of MSA.

2

Client Served

Rating: 5

As we struggle every day searching and hoping for a cure or for something to just get better, we must always stay strong and this organization provides hope to all those with MSA. This organization took its time to come to my home and see my father and speak to him, and not only be there for us, but works every day to do their best to fight this disease for all who have it.

2

Volunteer

Rating: 5

Awesome bunch of people working together for a great cause. My wife and I love our tee shirts. Chocolate cake for breakfast could become a habit!

2

Donor

Rating: 5

Defeat MSA has brought hope and comfort to many who struggle with this disease. They are a critical organization in terms of connecting people, raising awareness about MSA, and advocating for research funding.

2

General Member of the Public

Rating: 5

Great place for support! We cant thank you enough for everything that you do.

Previous Stories
2

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.

2

Client Served

Rating: 5

I am connected to this charity as a general member of the public. I knew nothing about this strange disease - never heard of it at all. But one of my friends was diagnosed with it and since then, I have learned a lot of them. One of the leaders of the charity is a brain doctor. None of them are paid for their work - they are all volunteers, and they are constantly working to help people suffering with this disease. They invented a mobile app to help support people all over the world with this disease. They raise money for research. I know where donations are going - directly to help people with the disease and their families with support programs. I hope they continue to reach more and more people.

Previous Stories
2

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!

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2

General Member of the Public

Rating: 5

Defeat msa is ran by volunteers all directly connected to multiple system atrophy, they have a loaner closet for people in need of different medical devices, they also have an online hub where people can chat live with others around the world, their website has alot of very helpful information and their new monthly newsletter is awesome.. This non profit is the best out there!!

1

Client Served

Rating: 5

DefeatMSA is very knowledgable about Multiple System Atrophy. They support the persons with and their significant others in this difficult disease with no yet known treatment or cure.
Great advocates for a worthy cause.

1

General Member of the Public

Rating: 5

This nonprofit holds a place near and dear to my and my family’s hearts. Thank you for all you do, in the fight to find a cure for MSA

1

Client Served

Rating: 5

Defeat MSA has been a powerful voice in raising awareness. They were very involved with my uncle as
He battled MSA. Keep up the good fight!

1 Shauna R.1

General Member of the Public

Rating: 5

Since Defeat MSA's (5013b) inception it has continued to set an exquisite precedent for nonprofits committed to spreading awareness about Multiple System Atrophy. During this time Defeat MSA has put in countless hours and time to create a global presence. Multiple System Atrophy is a debilitating Neurological disorder that isolates the warriors (patients) with MSA. I'm continuously in awe of the frequent consistent and thoroughly planned progress due to the strategic constant work by Defeat MSA.
Truly yours, Shauna Ruttan MA

1

Client Served

Rating: 5

We are thankful for Defeat MSA! It has worked hard to support people dealing with this disease. This year, they invented the first application for the phone. I have it on my mobile phone. MSA is what my nephew had, it killed him. Unlike many other charities, this organization is completely operated by volunteers and everyone in charge has an immediate family relationship to this horrible disease. It matters, because at least, I know that their motivations are in the right place. I know first hand, up close, the enormous suffering involved. I am praying for the day when we can defeat this forever!

Previous Stories
2

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.

Pam Smith H.

Volunteer

Rating: 5

My brother Mike Smith is living with MSA and through all this we learned about Defeat MSA.
We have volunteered, to help this grow and now we are a part of Defeat MSA. It's a rear disease, Most Doctors will never see any one with MSA. But we are trying and getting it out there and 100% of our donation go to research. There is no cure or medical help. Defeat MSA will not give up in trying to find a cure and that is what make this a great noprofit.

1 Travis H.2

General Member of the Public

Rating: 5

My Uncle has been a patient with MSA for over a decade now. I've seen him be very engaged with organizations like Defeat MSA both to to help spread awareness and find meaning to keep him going in his own life. I believe that being engaged with Defeat MSA has helped keep my Uncle living for years beyond what the doctors told him and helped other people in need get connected with a valuable resource. MSA is a disease that doesn't get enough attention in the mainstream and I think Defeat MSA will help it to get the attention and funding it deserves to help people suffering with it.

1

General Member of the Public

Rating: 5

This is an amazing organization! Such a friendly, kind, generous group that welcomes you with open arms.

1 Christah Camille A.

General Member of the Public

Rating: 5

Such an amazing group of people & support group! So thankful for them!

1 April C.2

General Member of the Public

Rating: 5

A charity run by passion and love to support families who need to know they're not alone

1

General Member of the Public

Rating: 5

My father recently passed of MSA! This organization was a wealth of knowledge & help!

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.

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