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MSA Coalition Newsletter - June 2020
News you can use---June edition
This month's Coalition newsletter features some helpful pointers on life with MSA during the COVID-19 pandemic, including news about a limited medical relief program through the National Organization for Rare Disorders.  There are links to online support group meetings through our partnering organizations, webinars for caregivers, and important updates from our research committee.  
Wondering about our fall patient and family conference?  Read where that stands in a message from our conference committee.  
All this and more can be found in this month's newsletter---so read on!
COVID-19 RESOURCES

In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program

NORD’s COVID-19 Premium & Medical Relief Program assists eligible rare disease patients facing financial challenges with out of pocket costs of health insurance premiums and limited medical assistance.

Washington, DC, May 12, 2020— United with more than 25 million Americans living with rare diseases, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Premium & Medical Relief Program to provide vital support to members of the rare disease community affected by the COVID-19 pandemic. The program will assist those with a confirmed rare disease diagnosis who have been directly impacted by the pandemic through a job loss, reduced work hours, furlough, quarantine, etc. 

“COVID-19 poses significant threats to the rare disease community, given the susceptibility of those with chronic conditions and the economic challenges that affect their ability to weather this storm. We are hearing from patients who have been furloughed or laid off and desperately need financial support for insurance, COBRA payments, co-pays and medical expenses,” said Pamela Gavin, Chief Strategy Officer for NORD. “Through this new program, we are providing premium and limited medical assistance to rare patients who need it most during this crisis.”

NORD recognizes the needs of the community and has developed this program to provide critical support. The COVID-19 Premium & Medical Relief Program helps with certain out-of-pocket costs associated with health insurance premiums, and supplies eligible uninsured and under-insured patients with support for limited medical expenses. These expenses include medical visits and telehealth consults, laboratory and diagnostic testing, physical therapy and medical equipment.

We are grateful to Sanofi-Genzyme for their generous donation to this patient assistance program, which is available to all eligible rare disease patients affected by COVID-19. NORD has been proud to serve the rare disease community with assistance programs providing support to patients since 1987. In order to continue to meet the community’s needs during this unprecedented time, NORD is seeking additional donations to its COVID-19 relief programs. Please help us to help our rare community.

For more information on NORD’s COVID-19 patient assistance programs, including eligibility requirements, please visit our website, contact NORD by telephone at 203.242.0497, or via email at COVID19assistance@rarediseases.org. To stay informed, the NORD COVID-19 resource center presents regularly updated information and vetted links relevant to the rare community during this pandemic.
ICYMI:  Coalition Webinar on MSA Care During the Pandemic
On April 20, the Coalition presented an hour-long webinar on caring for MSA patients during the COVID-19 pandemic.  Hosted by Coalition board vice-chair Don Crouse, the webinar featured Dr. Nikolaus McFarland, who is on faculty at the University of Florida's Movement Disorders Center, and Lisa R. Warren,  occupational therapist and the rehabilitation site manager for the UF Health Fixel Center for Neurological Diseases. Austin Crawford represented the patient community, and the presenters fielded questions from the viewing audience.  We are happy to offer it here in case you missed the live webinar, or if you want to refresh your memory.  
Rare disease patients and caregivers: How are you being impacted by the novel coronavirus pandemic? Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH’s Rare Diseases Clinical Research Network. Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Your responses may help researchers understand the impacts of COVID-19 on the rare disease community. Complete the survey or learn more at rarediseasesnetwork.org/COVIDsurvey

ONLINE SUPPORT GROUPS FROM OUR PARTNER CUREPSP
CurePSP has some excellent resources available to MSA families. We have listed some of them below so that you can take advantage of these opportunities.

*NEW* People with PSP/MSA/CBD and their Carepartners

Meeting Times: June 10 and June 24 from 3pm-4:30pm EST
Meeting Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4

Meeting Tel: +1 646 558 8656          Meeting ID: 850 7745 0341   

Facilitators: Gregg Felice, LCSW-R felice@curepsp.org, Jessica Shurer, MSW, LCSW jshurer@neurology.unc.edu

*NEW* Carepartners of People with PSP/MSA/CBD

Meeting Times: June 11 and 25 from 3:00pm-4:30pm EST
Meeting Link: https://us02web.zoom.us/meeting/register/tZAvceitrzotGdfteL8WR2LX01SjASUJ1Efr

Meeting Tel: +1 +1 646 558 8656  Meeting ID:  842 6151 1733            
Facilitators: Gregg Felice, LCSW-R felice@curepsp.org, Ileen McFarland ileen@earthlink.net

People with MSA

Meeting Time: 3rd Monday of each month at 8:00pm Eastern 
Meeting Link: https://attendee.gotowebinar.com/register/8182973838726361090
Meeting Tel: (914) 614-3221; Access Code: 500-058-061
Facilitator: Cathy Chapman, Phone 307-332-4144, email cec@wyoming.com 

Carepartners of People with MSA

Meeting Time: 1st Monday of each month from 8:00pm – 9:00pm Eastern 
Meeting Link: https://www2.gotomeeting.com/register/977578139
Meeting Tel: (415) 655-0060; Access Code: 950-759-636
Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-2450

 

*NEW* After The Loss: A Bereavement Support Group for Carepartners

Meeting Times: 3rd Monday of each month from 2pm-3:30pm EST
Meeting Link: https://us02web.zoom.us/meeting/register/tZwtdu-urz8rHdSU-qMSeeVgfEAMunr3e7bp

Meeting Tel: +1 646 558 8656 Meeting ID: 880 1661 4170
Facilitators: Gregg Felice, LCSW-R felice@curepsp.org, Meghan Sweeney, LCSW meghansweeney1@gmail.com

This group is intended only for those who have lost loved ones to PSP/MSA/CBD or a related disease in the past year. 
Brain Support Network Support Groups
Our partner organization, Brain Support Network, offers support groups and in-depth information for MSA families.  To see their offerings, click here.
Patient  and Family Conference 2020--A Word from the Conference Committee
The MSA Coalition recognizes the importance of the annual conference and the opportunities it affords the community to hear from experts in the field and to meet others facing life with multiple system atrophy. In working through best approaches to provide this important service while maintaining the safety of our community, we have started planning for several virtual fall events, some of which will be in partnership with other organizations.  These will be hosted regionally to create the most meaningful experience for participants but also will allow for flexible registration to ensure everyone who is interested in participating has an opportunity to do so.  We are busy planning and will continue to post updates as more details become available. Stay tuned. 
 
View
Planning Ahead for the Care You May Need: Health Care Decisions in the Era of COVID-19 is a recent webinar presented by: Rebecca Sudore, MD - Professor of Medicine, UCSF & Anne Kinderman, MD - Director, Supportive & Palliative Care Service, ZFGH and Associate Clinical Professor of Medicine, UCSF, for the Family Caregiver Alliance.  To see other webinars they have produced for caregivers, click here.  
What About Home Health Care and COVID-19?
The AARP has produced guidance on having home health care services in these challenging times, including general questions, as well as how to keep your home healthy.  More advice is available on this page.  
Stress and Coping
Last month we shared information from the CDC about ways to cope with stress.  Here's another view, this one from Harriett Hodgson,, entitled Running in Circles: Gerbil Wheel Caregiving.
Thanks to Robin Riddle of the Brain Support Network for the link.
 
Free Virtual Exercise Sessions
Eric Johnson of Movement Revolution, an exercise and wellness company specializing in working with people who have neurological conditions, is offering free Revolution@Home training videos.  Click here and scroll down for the whole set.
Give Now to Build Hope
New Miles for MSA Fundraiser
Austin Urban started running at the beginning of May in support of the Coalition's mission and in honor of a best friend.  Family members and friends have pledged amounts for each mile he runs--and he's not done yet.  We are so grateful to Austin and to the members of the MSA community who find creative ways to raise funds so we can provide help and hope to all MSA families.  Thank you!
Federal Campaign Special Solicitation
In recognition of the fact health nonprofits providing critical services to patients and caregivers are struggling with reduced resources, the US Combined Federal Campaign is hosting a special solicitation period.  If you have given to the Coalition through this campaign, or qualify to donate this way, we would ask you consider a gift now.  100 percent of your gift will go to the charity you designate; there will be no distribution fee.  Gifts may be made through this portal until June 30.   
 

A Message from the Research Committee Chair
 

With so much of the daily news focused on Covid 19 it may seem like MSA research has been abandoned or pushed to the back burner.   This is just not so.   Much activity related to MSA research continues to go on behind the scenes at the MSA Coalition.

Our Research Committee has met twice since March to continue developing our plans to coordinate more focused Collaborative Core Research Projects involving Genetics, MSA laboratory Models, Biomarkers and Environmental factors.  If you missed our exciting announcement about this late last year please see our press release. 

Our Scientific Advisors have also been hard at work this spring, reviewing and scoring 26 research grant proposals which we received from researchers working in 15 countries.  Each time we put out a call for proposals, MSA researchers around the world are eager to answer with their ideas.   We are grateful to our advisors and researchers everywhere for their dedication to this rare disease.

The Board of Directors will very soon pick the top recommended research projects to receive funding so they can get started on their important work this year.  Watch for an announcement soon with more details about the lucky projects.  The decision of which research projects to pass over and which to fund is not an easy one but we have a lengthy and rigorous process we borrowed from the Michael J Fox Foundation to ensure the highest calibre projects are chosen. 

Members of our Research and Executive committees are keeping in close contact with various representatives of the pharmaceutical industry as we continue to partner to assist them in spreading the word to MSA patients about their clinical trials.  Some members of the MSA community may have participated in online or telephone surveys recently.  These types of activities help pharmaceutical companies learn important information from patients themselves that can help to ensure future clinical trials are designed with the patient’s needs at the forefront.  Special thanks to those in the MSA community who volunteer to participate.

All in all it remains an exciting and optimistic time for MSA research as our MSA treatment pipeline continues to grow and build hope.  Keep the faith and stay safe everyone.
--Pam Bower
Research Study Open to Participants 
Cognitive Scales in Patients with Neurological Conditions
 
Who: We are researchers at Massachusetts General Hospital Ataxia Center and the Schmahmann Laboratory for Cerebellar Neurobiology.
 
What: We are looking for people over the age of 18 with MSA to complete a set of neurological tests. This will involve drawing, speaking, and memory tasks and will take 20-25 minutes. This is completely voluntary and you can stop at any time.
 
Where: A digital Zoom call to you at home from researchers at the Massachusetts General Hospital.
 
Why: We are looking to determine whether our new scale for detecting Cerebellar Cognitive and Affective Syndrome (CCAS) can distinguish between patients with cerebellar disorders and those with other neurodegenerative conditions; and whether the CCAS Scale is a more sensitive screen for changes in memory, thinking, and concentration than currently available tests.
 
Interested in participating?
Please contact the study coordinator Brigitte Jacoby at
860-841-0598 or bjacoby@mgh.harvard.edu
to learn more or set up an appointment.
 


The MSA Coalition's treatment pipeline was recently updated---take a look at the progress that is being made. 
Give now to build hope


Looking for merch?
We have added some new items to our online store.  In addition to T-shirts, we now have some ties and scarves with the MSA Coalition logo!  Check out all our items here. 
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