“The world needs to be kinder to people with MSA” – Exclusive interview with Philip M. Fortier, Founder of the non-profit Defeat MSA Alliance.
Philip Fortier talks about the devastating loss of his brother and raises awareness on Multiple System Atrophy in this exclusive interview with Goodera
Do you know someone who has battled Multiple System Atrophy (MSA) before? If you have, then you would know how devastating it is to fight a disorder that has no known cause or cure.
MSA is a rare neurodegenerative disorder that affects the functions of the human body such as blood pressure, breathing, bladder function, balance, and motor control. MSA symptoms normally appear at around 50 years of age and tend to spread rapidly over the next 5 to 10 years. Towards the later stages of the disease, the patient might suddenly die from respiratory or cardiac issues.
There are no established genetic or environmental factors that cause the disease. According to the National Institute of Neurological Disorders and Stroke, MSA affects potentially 15,000 to 50,000 Americans, including men and women and all racial groups.
Wondering how rare MSA is? MSA affects 5 people in every 100,000. Even a large majority of healthcare workers have never treated someone with MSA.
It is precisely a loss that resulted from MSA that prompted Philip M. Fortier and Dr. Pratik Bhattacharya to find Defeat MSA Alliance – a US-based 501(c)(3) charity that aims to serve those that suffer from MSA with the help of research, public awareness, and more education of health professionals on MSA.
The story behind MSA Alliance
Born in Detroit, Phillip grew up in Michigan but traveled widely. Philip holds a graduate degree in Philosophy and Comparative Religion and teaches at the University of Detroit Mercy.
The spark behind Defeat MSA Alliance was Joseph Fortier – Philip’s elder brother, also called Joe. Joe was a dedicated professional who worked in the field of sleep medicine who constantly carried out sleep studies, conducted research, and helped patients – both old and young.
In 2011, Joe began to slur his speech. Soon after his first consultation with a doctor, he was diagnosed with Parkinson’s disease. However, medicines failed to work – prompting Joe to get a second consultation done, with a different doctor. That was when everyone learned that Joe had Multiple System Atrophy – a rare disease that is difficult to diagnose and impossible to cure.
Extremely frustrated that there were barely any resources to support his brother through the devastating illness, Philip decided to act.
On Joe’s birthday, August 4, 2012, Philip presented the good news to Joe that a foundation had been established in Joe’s honor, to help those with MSA – Defeat MSA Joseph G. Fortier Foundation, now known as Defeat MSA Alliance.
Unfortunately, after suffering from MSA for three years, handling the many challenges of the rapidly progressive neurodegeneration with dignity, Joe passed away on January 21, 2013, at only 56 years of age.
The mission of Defeat MSA Alliance was to carry out what Joe demonstrated in his own life – to advance medical research to help others, this time to help others who suffer from the same affliction he endured.
Momentum quickly abounded, with more people joining the team. As someone who has traveled widely, Phillip put his worldly experience to good use by building the first international consortium of MSA charities. In 2019, he introduced Defeat MSA/Vaincre AMS Canada, the first and only MSA charity in Canada.
Today, Phillip continues to work tirelessly as the director of the Defeat MSA Alliance, Defeat MSA/Vaincre AMS Canada, and Defeat MSA Down Under, the groups in Australia and New Zealand. The charities work together to organize fundraising, manage social media, and staff an international toll-free support hotline.
March – MSA Awareness Month
This MSA awareness month, Philip talks to Goodera about his journey so far, the vision he holds for Defeat MSA Alliance, and what we can all do to increase awareness on the little-known devastating disease, that is MSA.
1. Why is it important for people to be aware of rare diseases?
Experts say that there are 7000 different rare diseases. But, if you look closer, you will realize that many rare diseases exhibit symptoms associated with other more common diseases. Also, some rare diseases such as Multiple System Atrophy (MSA) – the disease that our affiliated charities are targeting – could be less rare than we think because of the chances of misdiagnosis or underdiagnosis. Those 7000 rare diseases account for 10% of the general population anywhere.
The second reason why people should be concerned about rare diseases is that only a very small percentage of them have any effective treatments.
The last reason for concern is that there is no disease so rare that those affected by it don’t deserve treatment. All people in the world have the right to treatment – all people, especially those most in need deserve care and attention.
Unfortunately, much of the current attention is focused on more widely known diseases. Diseases such as MSA are often overlooked, and MSA patients are almost always confronted with a very dim prognosis, left with very few alternative options.
2. Tell us about your organization Defeat MSA Alliance and the program(s) you run?
Defeat MSA Alliance is an inclusive US-based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness, and nurture promising research. Staffed entirely by volunteers, Defeat MSA Alliance aims to achieve five primary goals:
- To build a community that truly serves those that suffer from MSA
- To cultivate promising research into treatments and slowing MSA
- To foster increased education of health professionals about MSA
- To raise greater public awareness about living with MSA
- To advocate for all those people impacted by MSA
The Alliance invites all other like-minded individuals around the world to join in on this noble fight. To speak for those who cannot – with one mind, one heart, and one voice – to defeat MSA forever
3. Can you tell us a little bit about the change you were able to bring about in the past 7 years of running the Defeat MSA Alliance?
Because of our work, we now have been able to establish five separate charities in different countries, which is something I consider to be very impactful. In the course of our journey, we have helped establish another organization and facilitated a worldwide research consortium.
Through consistent efforts, we have dramatically increased awareness, developed patient and caregiver support patients, and funded new promising research.
4. How have things changed for your non-profit since the COVID-19 crisis? How have you adapted to the new normal?
The COVID19 pandemic has greatly affected the workings of charities all around the world. First of all, our fundraising has declined. And so has our ability to hold support meetings, onsite conferences, and medical education programs. It has been incredibly tough on us, but we have been doing and continue to do our best in these difficult times.
5. Is there anything that you wish more people knew about your organization or the issues you are trying to solve?
Due to the rarity of the MSA disease and the speed of decline in health, it is common for our patients to feel abandoned by society and in some cases, their own families.
We want people to realize that just because someone has a rare disease and thus is out of sight doesn’t mean they are not important or that their lives are not valuable. We need to connect with our patients, have empathy, and share their stories with the wider community.
6. How do you think volunteers can help Defeat MSA Alliance or other non-profits focused?
Volunteers are key to our survival amid the COVID19 pandemic. We need to find people that care! Even though MSA is a rare disease, our community is still important and still needs attention.
Volunteers can help us raise awareness about unknown diseases and fundraise for a community that receives little monetary help. We believe that volunteers can also provide much-needed support to the people in our community who are often ignored or slip through the cracks of the larger society.
This is not just about helping those with a rare disease. It is about inclusion, respect, and empathy.
7. What is the vision that you see for Defeat MSA Alliance?
My vision is to fund further research to find answers to the many of the fundamental questions MSA presents – there’s still so much that needs to be done in this regard. Moreover, a hint – there is still no MSA Charity in South America!
This MSA Awareness Month, pledge to learn more about MSA or rare diseases in general. Spread the word, and help the world be more inclusive towards those who suffer from rare diseases.
Defeat MSA Alliance has partnered with Goodera on several impactful virtual volunteering opportunities. Interested in learning what you can do to help spread awareness? Get in touch with us.