33-question survey- what MSA Coalition should focus on?

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MSA folks –

The MSA Coalition, based in North Carolina, is asking for those in the MSA community to complete a 33-question survey:

www.surveymonkey.com/s/MSAAWG

In most of the questions, you are asked to state your level of agreement/disagreement to various statements such as:

  • Online support groups are helpful in providing assistance to MSA patients and caregivers.
  • A handbook about MSA written for the layman would be helpful to better educate the public about the disease, its symptoms and existing treatments.
  • Reference cards containing relevant definitions, key symptoms, effective drugs and known therapies would be good resources for medical professionals, especially those who have “first contact” with the MSA patient.
  • Informing medical professionals, the general public and the MSA community about the process of brain donation is an important goal.
  • Providing a reference work about MSA (such as Professor Wenning’s handbook) to all the medical/osteopathic school libraries would help further professional education about MSA.
  • Funding the development and publication of a journal solely dedicated to MSA is worthwhile.

Pam Bower with the MSA Coalition says:  “Your input via this survey about the key advocacy goals on which we need to focus over the next three to five years will form the basis for our recommendations to be presented” at a November 1-2 meeting in Las Vegas.

The meeting, “Global MSA Research Roadmap,” is being chaired by Dr. Ryan Walsh from the Cleveland Clinic in Las Vegas.  He’s the neurologist of Kerry Simon, the “rock n roll chef” with MSA.  The meeting is being organized with the help of an advisory committee including prominent MSA research leaders, Dr. Philip Low and Prof. Gregor Wenning.  According to the MSA Coalition, other key MSA researchers from around the globe will attend as well as representatives from the US National Institutes of Health, pharmaceutical and biotech companies, and leading advocates from the MSA community.

At the November research meeting, “Where are we now?” and “What do we need to cure MSA?” will be the major topics of discussion.  A detailed plan will be developed, according to the MSA Coalition.

If you have the interest, time, and means to attend the November research meeting in Las Vegas, please let me know.  Perhaps you can attend as a representative of Brain Support Network?  I don’t know how hard it will be to get a seat in the room.

Thanks,
Robin