Multiple System Atrophy Awareness

Spreading awareness worldwide

Support Resources


Help is just a few mouse clicks away …

With the explosion of the internet as a method of communication, support and information on Multiple System Atrophy is readily available.

You may choose to:

1. If you are in the USA or Canada:

Dial toll free to the MSA Coalition Support Line 1-866-737-4999 and speak with

Vera James (past MSA caregiver)

Judy Biedenharn (retired Registered nurse and past MSA caregiver)

(This resource provided by the MSA Coalition )

2. If you are in the UK you can contact MSA specialist nurses:

Katie Rigg (North)01434 381932

Samantha Pavey (South) – 020 3371 0003

nurses@msatrust.org.uk

(This resource provided by The Multiple System Atrophy Trust)

3. Attend a monthly face to face support group meeting:

USA: In Person Meetings – list from The MSA Coalition

USA: In Person Meetings – list from CurePSP

UK: In Person Meetings – list from The MSA Trust (UK)

4. Attend a patient/family conference:  Events Calendar

5. Join an online support community to read information and ask questions in an email or web bulletin board format:  Online MSA Communities

6. View an educational webinar via the internet:  MSA Webinars

(This resource provided by CurePSP)

7. Attend a support group meeting via computer and/or phone:  Online Meetings

(This resource provided by CurePSP)

8. Follow a blog of an MSA patient or caregiver:  MSA Blogs

9. View YouTube videos prepared by MSA patients or caregivers:  MSA on YouTube

10. Order an educational DVD from the MSA Coalition:

4 DVD Box set from the 2012 MSA Conference

Sophie’s Search for a Cure

11. Ask Professor Wenning an MSA question. Email your medical or research questions to Professor Gregor Wenning MD PhD MSC, medical doctor, scientific researcher and educator, and internationally known expert on Multiple System Atrophy.  He will email you back personally, all questions and answers are confidential.  Note that Professor Wenning is unable to provide a diagnosis via email, it’s best to visit a Movement Disorder or Parkinson’s Specialist near you.

12. Search for the latest clinical trials accepting MSA patients: MSA Clinical Trials

13. Register to be notified of upcoming clinical trials: Register now

14. If you need general advice about where to find MSA Information or for any questions you don’t see covered in the resources on this website please contact Pam Bower


Pam has over 15 years experience in providing general MSA information and advice via online MSA support groups. She has extensive contacts around the world with various MSA support groups and can also suggest doctors experienced in dealing with MSA patients. She is currently moderator of the shydrager MSA support group on Yahoo and admin of Miracles for MSA and various regional MSA groups on Facebook.

There are several  MSA organizations worldwide which have a lot of support materials available online and in various languages:

<—– Please check the links section for your country.

Note : the UK resources from the MSA Trust are very informative, please be sure to check them out.

 

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