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Giving Tuesday – A Critical Day for Multiple System Atrophy Research

Giving Tuesday – A Critical Day for Multiple System Atrophy Research

If you want to have the biggest impact possible in the quest to find better diagnostic tools, treatments and hopefully a cure for multiple system atrophy #GivingTuesday (November 28, 2017) is the most important day of the year!

100% of every dollar raised, matched, and won on #GivingTuesday will go directly into the MSA Coalition Research Grant Program! If you help us fundraise the total could reach $200,000 or more!

Don’t stay on the sidelines during this critical day!

Read on to learn more….

History of Giving Tuesday

#GivingTuesday has been celebrated each year since 2012, on the first Tuesday after Thanksgiving (in the U.S.). It symbolizes the start of the Holiday giving season, which for most charities represents the time of the year when the biggest portion of their donations are received. The MSA Coalition has participated each year through its partnership with the CrowdRise Holiday Challenge. Last year the MSA Coalition raised more than 10% of its total revenue for the year on #GivingTuesday.

The CrowdRise Holiday Challenge, A Great Event For MSA

This year’s CrowdRise Holiday Challenge runs from November 21 – January 3, 2018. It is being

The Multiple System Atrophy Coalition's 2017 Holiday Hope for a Cure fundraiser on Crowdrise

Join The MSA COalition’s 2017 Holiday Hope For A Cure Team

sponsored by the Newman’s Own Foundation and is offering $500,000 in prize money to the top charities. The winner of the 6-week challenge will receive $150,000 and the top 10 causes will receive prize money. There are also bonus prizes throughout the Challenge with another $100,000 being distributed. Plus, there are separate prizes for #GivingTuesday totaling another $100,000. The top 3 causes will receive grand prizes.

Who wants to see a significant portion of these awards coming into the MSA Coalition for research, education and awareness initiatives?

If you are saying “Me! Me! Me!” read on…

Why the MSA Coalition Needs You on Giving Tuesday

We all know multiple system atrophy is a very rare and little known disease. Because of this it is very difficult to motivate outsiders to give to the MSA cause, let alone to fundraise. Grass roots, at least for now, is our single most effective way to raise money. That means, we need YOU to participate.

Last year (2016), the MSA Coalition had 100 families actively participate in the CrowdRise Holiday Challenge. On Giving Tuesday we raised just over $90,000, which was good enough for third place for the day. Unfortunately, two other charities did better and the Coalition did not win any of the prize money for the day. On the bright side, The MSA Coalition maintained its third place status throughout the CrowdRise Holiday Challenge and in the end secured the Third Place prize of $25,000 which was added on to the Challenge total of over $300,000 raised for MSA.

That’s right, with just 100 families participating the MSA Coalition raised over $300,000 dollars in 6 weeks and added another $25,000 in prize money to that total. Imagine what we could do if 200 families participated! What about 300, 400 or even 500! This is why we need you!

1: Sign Up to Help Us Raise and Win Money This Holiday Season

Joining our team is easy and will only take a few minutes

MSA Coalition 2017 Holiday Hope For A Cure Team Members

2017 Holiday Hope for a Cure Team Members

Join the MSA Coalition’s 2017 Holiday Hope for a Cure Team

2: Like and Follow The MSA Coalition’s Facebook Page for Volunteers

Don’t fundraise alone! Become a part of the MSA Coalition team of fundraising volunteers. We

Diane & Elaine Offer Hope & Advocacy for those with MSA

will post lots of great tips, updates and key dates to help make your fundraiser a success! Likewise, share your ideas, questions and success stories to help the whole team become better!

Like The MSA Coalition Volunteers Facebook Page

3: Sign Up for Special Giving Tuesday Newsletters

  • How to Set Up a CrowdRise Holiday Challenge Fundraiser
  • Tips on Fundraising Easily and Successfully
  • Success Stories From Other MSA fundraisers
  • Alerts About Key Fundraising Dates and Bonus Challenges
  • Fundraising Updates

If you are on the fence or nervous about fundraising, sign up for our newsletter and select the Holiday Challenge under fundraising as an interest. It is not a commitment to fundraise, it is only a commitment to learn more!

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Giving Tuesday – A Critical Day for Multiple System Atrophy Research

Report on MSA Coalition Funded Research: Exendin-4

March 21, 2017

A new paper published online this month in the journal Brain “Insulin Resistance and Exendin-4 Treatment for Multiple System Atrophy” has added to a growing body of evidence that drugs designed to treat type 2 diabetes may have potential to treat multiple system atrophy and other neurodegenerative diseases. In this innovative work, partially funded with a seed grant from the MSA Coalition in 2015, Wassilios Meissner and his team at the University of Bordeaux, France describe results that suggest the anti-diabetic drug exendin-4 may be neuroprotective in a mouse model of multiple system atrophy.

In the experiment, MSA mice were split into three groups, one group received a placebo and each of the other two

University of Bordeaux MSA Research Team L to R: Wassilios Meissner, MD, PhD; Pierre-Olivier Fernagut, PhD; Erwan Bezard, PhD

University of Bordeaux MSA Research Team
L to R: Wassilios Meissner, MD, PhD; Pierre-Olivier Fernagut, PhD; Erwan Bezard, PhD

groups received different doses of exendin-4 over several months. Those mice treated with the drug showed more preserved dopamine neurons and a reduced accumulation of alpha-synuclein, the same protein that accumulates in the brains of MSA patients.

The Importance of Animal Model Experiments

Animal model experiments (known as pre-clinical trials) are an important early step in the process of determining if a drug is a good candidate to treat MSA. Although these results seem positive, it is not yet possible to know if this or similar drugs will work for MSA patients. Dr. Meissner states, ”Preclinical models can at best illustrate the biological engagement of a compound and make us confident that the drug will do what it is supposed to, while the real test will always remain the evaluation in humans.“ Indeed, gathering this preliminary evidence aids in building a stronger rationale for moving on to clinical studies of a drug in patients.

Mounting Evidence from Other Neurodegenerative Disease Research

In recent years, exendin-4 as well as another FDA approved anti-diabetic drugs liraglutide have both shown positive effects in animal models of Alzheimer’s Disease (AD) and Parkinson’s Disease (PD). Early phase clinical studies of these drugs are in progress now with AD and PD patients with results expected to be reported soon.

What is the Next Step for Multiple System Atrophy?

The pharmaceutical industry drug owners are already starting to take an interest in repurposing this class of type 2 diabetes drugs, known as GLP-1 analogues, for neurodegenerative diseases. MSA researchers are already engaged in discussions with industry about the future possibility of more drug trials with derivatives of GLP-1 analogues. It is hoped these trials might include MSA patients.

About the MSA Coalition Research Grant Program

The MSA Coalition takes a three pronged approach to investments in research:

  1. Fund studies looking for clues to the underlying cause (pathogenesis) of MSA.
  2. Fund research to develop a definitive biomarker to achieve an accurate early diagnosis.
  3. Fund work to evaluate and develop potential new therapies.

Up to now the MSA Coalition’s investments in research have taken the form of small grants of up to $50,000 each. These are offered to research groups around the globe looking to test new and innovative ideas. 27 such grants have been funded since 2013 for a total investment of $1.25 Million.

In January 2017 the MSA Coalition published a request for research proposals and received back 51 applications requesting a total of $2.3 million in funding. Peer review of these projects has begun in order to pare down the number of applications to fund only the best of the best within our limited research budget. The top projects will be awarded funds from the 2017 research budget amounting to $525,000.

The MSA Coalition thanks our generous donors for their support without which our work would not be possible. Donations are gratefully accepted at https://www.multiplesystematrophy.org/msa-donation

Frequently Asked Questions

Q. Can I ask my doctor to prescribe Exendin-4 (Byetta or Bydureon) “off label”?

A. There is no clear evidence available that this drug will help MSA patients. In the event an off label prescription is obtained, the cost would likely not be covered by health insurance even though this is an FDA approved drug, because it is not currently indicated for use in MSA.

Q. Can I get Exendin-4 (Byetta or Bydureon) prescribed through a “compassionate use” program?

A. Your doctor would need to apply to the drug company (Astra Zeneca) and also to the FDA to request this. This information from the FDA describes the Compassionate Use Program (also known as “Expanded Access”).

https://www.fda.gov/NewsEvents/PublicHealthFocus/ExpandedAccessCompassionateUse

Q. When and where will a clinical trial for Exendin-4 be available to MSA patients?

A. This is unknown at this time. The MSA Coalition is currently assessing the situation and getting scientific opinions. It may be that more preliminary work is needed in animal models before this could realistically be tried in human MSA patients.

Q. Where is the best source for MSA patients to track clinical trials?

A. You can search for clinical trials at the following websites:

https://www.clinicaltrials.gov

https://foxtrialfinder.michaeljfox.org

https://www.clinicaltrialsregister.eu

Q. How can MSA patients be included in future clinical trials?

A. MSA patients in every country are encouraged to register in the Global MSA Registry (GLOMSAR) so that they may be notified of future clinical trials and participate in research surveys. Note that a caregiver or family member may enter the information on behalf of the patient.

https://natural-history-synucleinopathies.com/glomsar