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MSA Coalition Newsletter - October, 2020
Conference Starts Tomorrow! Register for the Annual Patient and Family Conference hosted in partnership with MSA New Jersey
Register now for the first conference in the MSA Coalition 2020 Virtual Conference Series. MSAC has hosted the conference since 1989, and we are now in our sixth year of livestreaming to a global audience. With this strong foundation and engaged audience, the Annual Patient and Family Conference continues to educate, connect and inspire.
 
On October 2 – 3, MSA patients, their families and care partners, and healthcare professionals will participate in our Annual Patient and Family Conference, hosted in partnership with MSA New Jersey.
 
Register for the October 2 – 3 Conference
 

Save the Date! Second Conference is October 23 - 24
The second conference in the MSA Coalition 2020 Virtual Conference Series will take place October 23-24. This Patient and Family Conference will be organized by MSA Coalition Emeritus Board member, Dr. Thomas Chelimsky and his team at the Medical College of Wisconsin.

Participate in World MSA Day, Saturday, October 3
October 3 is World MSA Day, when MSA patients, family of patients, and care givers from all over the world join together to support each other and raise awareness of MSA. Here are some ways to be part of this event:
 
1. PLEDGE YOUR MILES: Our goal is to walk around the world collectively! Please pledge and record your miles between now and Dec 31 to be counted in the total. Go to this page and click Contribute to enter your miles. www.World-MSA-Day.org
 
2. LIGHT A CANDLE: Everyone is asked to light a candle for one hour starting at 8PM on October 3rd in your location so an unbroken chain of light reaches around the world for 24 hours.
 
3. SHARE ON SOCIAL MEDIA: Please feel welcome to post photos on social media of your candles using the hashtag #WorldMSADay. We’d be happy for you to share photos of your loved one on our Facebook page. Leave a message to tell us where you are from and who you are honoring with your candle.
Give now to build hope
Austin Crawford Documentary Highlighted by Local News Station
MSA patient and advocate Austin Crawford explains MSA and discusses what it’s like to live with the disease in a moving news segment. He also talks about his MSA awareness video project that blossomed into an award-winning documentary funded by the MSA Coalition.
 
Watch Austin Crawford’s interview here.
Recommended Reading: Self Care for the Caregiver
The care of our loved ones suffering with MSA falls in our laps. Unlike other diseases, there is not a clear path and rarely a single health provider to guide our way. Even caregivers who take herculean efforts to meet the needs of their loved ones feel they aren’t doing enough. 

It’s tremendously difficult to see our people suffer from a disease that has no cure and very little treatment. We scour the Internet and search for ways to handle even the smallest symptom. What we find are multiple options. We try this; we try that. When things don’t help – or don’t help much – we start over. And one symptom is replaced with another. 

What often happens to us through this process is a growing feeling of guilt. If we had just done this... Tried that... If we researched more… If we were good enough…

Guilt takes its toll and our wellbeing suffers. What to do?  

CurePSP’s Carepartner Guidebook offers these suggestions:

"What you can do: Lower your standards from ideal to real; aim for a B+ in the many aspects of your life rather than an across-the-board A+. When guilt nags, ask yourself what’s triggering it: A rigid ‘ought’? An unrealistic belief about your abilities? Above all, recognize that guilt is virtually unavoidable. Because your intentions are good but your time, resources, and skills are limited, you’re just plain going to feel guilty sometimes – so try to get comfortable with that gap between perfection and reality instead of beating yourself up over it.”

Another good resource is an article in Today’s Caregiver magazine: “Eight Tips to Managing Caregiver Guilt.”
Theravance Biopharma Releases Clinical Trial Findings on Symptomatic nOH Treatment



See the full Infographic

Read the Summary

Find out about the Phase 3 Clinical Trial now recruiting at multiple study centers worldwide.
MTC & SCC 50/150 for MSA Fundraiser Honors Debbie Dailey
Family, friends and loved ones of Debbie Dailey don’t know if she will win her personal battle against MSA. But they launched this fundraiser because they do believe she can, at a minimum, be a key contributor to winning the war against MSA in the coming years and decades for the tens if not hundreds of thousands who will be living with the disease over that time frame. That is why they are running and cycling to raise awareness and generate revenue for the MSA Coalition.
 
Find out more about the fundraiser.
 
MSA Coalition Earns a “Give with Confidence” 100/100 Rating from Charity Navigator
We’re excited to share some news! The MSA Coalition has been evaluated by Charity Navigator through their revolutionary Encompass Rating System and received a 100 out of 100 rating!
 
The Encompass Rating System is a comprehensive evaluation tool that analyzes nonprofit performance based on four key indicators. In July 2020, Charity Navigator released the first indicator, Finance & Accountability, to highlight nonprofit organizations demonstrating fiscal responsibility.
 
You can find our Charity Navigator Encompass rating here and learn more about Charity Navigator and the Encompass Rating System at charitynavigator.org/encompass.
 
 
 
Give Now to Build Hope
Who We Are; What We Do
Do you ever wish you had a clear statement of what the MSA Coalition is and does?  Your wish is our command – check it out here!
Call us for assistance and a listening ear: 866-737-5999
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