We're Taking Our Pulse

We need your help

Article Highlights:
  • To help improve its programs and clinics, MDA is actively seeking your input through a variety of outreach efforts, including surveys and advisory groups.
  • Be sure to visit mda.org to access the surveys mentioned in the article, and share your feedback and suggestions.
  • Visit MDA's Advocacy section to learn more about becoming an MDA advocate, as well as to gain access to vital information about MDA's ongoing legislative and outreach efforts.
by Annie Kennedy on July 1, 2012 - 3:00pm

QUEST Vol. 19, No. 3

In describing our MDA community, I’ve often referred to us as being much like a human body. Our sponsors and volunteers are our backbone, and the families we serve are our heart. Without our sponsors and volunteers, we would collapse; without our heart, we would cease to exist.

MDA is continuously measuring the pulse of our MDA community and at all times is centered on the heart of our effort — you. Here are a few of the ways that MDA is actively seeking your input.

‘Survey says!’

A number of surveys are open on mda.org, and it’s vital that we hear from you about your experiences. Current surveys on mda.org, which are designed to take only a few minutes to complete, include:

Newborn screening survey: This survey, which will be live Aug. 1, is being done in connection with efforts to determine the feasibility of implementing widespread newborn screening in the United States for Duchenne muscular dystrophy (DMD). However, anyone in the MDA community who has had a baby in the United States should take this survey, regardless of neuromuscular disease type.

In September 2012, MDA is hosting a symposium to review findings from a recent pilot study in DMD newborn screening, as well as to address some of the barriers in this process and assess community “readiness” for newborn screening. (For more on the proposed DMD screening process, see Efficient System Developed for DMD Newborn Screening.)

DMD is not the only neuromuscular disease for which newborn screening is being considered. To date, the federal oversight committee that monitors newborn screening has discussed adding spinal muscular atrophy and Pompe disease to the list of recommended screening panels that test a drop of blood from a newborn’s heel for some 30 genetic disorders. So far, none of the neuromuscular diseases within MDA’s program has been determined to be ready for newborn screening.

MDA Clinic Survey: This survey should be taken by anyone who attends, or had attended, an MDA clinic. It is designed to help us better assess the effectiveness of the current MDA clinic model and to provide a direct mechanism for families to provide feedback to MDA about their clinic experiences — positive, negative, and in between. We highly value your comments, input and candor.

National Transitions Survey: Anyone with a neuromuscular disease who is between the ages of 16 to 35 should take this survey, which is informing MDA’s national transitions policy work. Survey results add to our understanding of the barriers to “transitional freedom” — the ability to transition from being a child with a neuromuscular disease to being an adult with choices in education, living situation, careers and more.

Advisory groups

MDA maintains numerous advisory groups and task forces, and we’re always seeking new candidates for membership on these committees.

Current groups include MDA’s National Task Force on Public Awareness, Clinical Advisory Committee, National Transitional Services Task Force and more. If you're interested, please email advocacy@mdausa.org.

Advocacy and outreach

Recess isn’t just for kids anymore — it’s also for effective MDA community advocates. When members of Congress are in their home districts during the August recess, that’s a perfect time to visit and remind them that the MDA community needs their support. Request robust and steady funding for research and government health agencies; tell them how the ABLE Act would be transformative for families; and thank them for their hard work on the PDUFA reauthorization, which included critical support for rare disease drug development. Be sure to sign up as an MDA Advocate and visit the MDA website's Advocacy section, where you also can learn more about the legislative issues mentioned here.

Be an informed voter

Are you a registered voter? Did you vote in the last election? If you answered “yes” to both questions, excellent! That puts you in a class of your own, as statistically the disability community is grossly unrepresented at the polls.

Care about research? Interested in how the candidates compare when it comes to important research priorities? An organization to which MDA belongs, Research!America, offers all candidates an opportunity to outline their research priorities. Read more about it in Advocacy + Voting = Power.

We are so, so proud of our amazing heart. Please help us make sure that we’ve got our finger on the pulse. The beat goes on ...

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