Support Hotline: (866) 737-5999 info@multiplesystematrophy.org

By Cathy Chapman, MSA Coalition Patient Representative

After the close of the 2022 Patient/Family Conference we come away with knowledge, support, connection with others, encouragement, and finding peace in knowing that we are not alone on this journey. Even as we were not able to gather as a community in person this year, the virtual conference was a successful was a wonderful way to still connect and learn from one another even from afar.

After attending the MSA-Coalition’s annual conference for several years, I always feel like I get plenty of support and gain knowledge each year. The professionals that are there to give presentations and advice are extremely knowledgeable, and I feel that they have given me in turn, the knowledge I need to navigate through this disease.

I always say that knowledge gives you power. It gives you the power to confront MSA head-on, and it gives you a feeling that you do have some control over what happens to you. Going to the conference gives you that power, and the strength to carry on, because you see that you are not alone and there are other people that you can lean on.

As this year’s conference comes to a close, it is helpful to know that the MSA-Coalition has many resources that can be accessed throughout the year online. These resources are valuable for patients, caregivers, and anyone else who wants to learn more about MSA itself or caring for MSA patients.

The 2022 Patient/Family Conference sessions will soon be available on the Coalition website so that even if you were unable to attend the sessions during the conference, you can still access the information that was shared. Stay tuned to our website for when these sessions are posted.
One of the biggest benefits I have found from the conference is the opportunities to network and connect with others who have MSA or are caring for someone with MSA. It’s a great comfort to know that there are many others going through the same struggles that you are. I always find that it is very easy to talk to people at the conference because everyone there is so compassionate – care partners, other patients, and professionals; everyone understands what you are going through, and it is helpful to connect with others in similar situations.

Beyond the conference, the MSA-Coalition has multiple support groups on Facebook. These are wonderful ways to connect with others on similar journeys throughout the rest of the year.
I hope that you find the conference recordings, virtual support groups, and other resources that the MSA-Coalition offers to bring you encouragement, knowledge, and support. The most relevant resources are linked below.

ENCOURAGEMENT IS THE FUEL ON WHICH HOPE RUNS – Unknown

STAY CONNECTED:

MSA COALITION WEBSITE

https://www.multiplesystematrophy.org/about-msa/

FACEBOOK

(PATIENT JOURNEY, BUDDIES & CARE PARTNERS, MSA COALITION,)

https://www.facebook.com/groups/MSAPatients

https://www.facebook.com/groups/MSABuddies

https://www.facebook.com/MultipleSystemAtrophyCoalition

Support Resources

http://www.multiplesystematrophy.org/wp-content/uploads/2022/04/MSAC-support-contact-list-2022-03-06.pdf

http://www.multiplesystematrophy.org/wp-content/uploads/2022/04/MSAC-support-contact-list-2022-03-06.pdf