Advocacy

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Advocacy can be a vague and off-putting concept.  How do you get a law passed?  How do you get research funded?  It actually all starts with us!

A small group of people can change the world.  Indeed, it’s the only thing that ever has.  Margaret Mead

 CURRENT CALL TO ACTION!

Legislation has been introduced into Congress that would allow families to put aside pre-tax dollars into a 529-type account to pay for health care, housing, transportation, the purchase of technology and lifelong education.  The funds will supplement but not replace benefits provided through Medicaid, Social Security and private insurance, allowing families with sons or daughters with significant disabilities a means to provide for extra costs associated with every day activities and community participation.

Find out more at the National Disability Institute.  Call/email your congressperson and tell them you support the passing of the ABLE legislation!  The House version (H.R. 3423) can be viewed here, and the Senate (S. 1872) here.  Find the contact information for your congressional representatives here, and let them know what you think!

GENERAL ADVOCACY INFORMATION

When it comes to Charcot-Marie-Tooth disease, the first step in advocacy is awareness.  It’s a disease that even some health care professionals are not familiar with, never mind policy-makers, and so the first step is information and education.  Building awareness and advocacy is indeed a process.

In some ways, it’s all about relationships.  Elected officials need to be educated about CMT, and the best way to do that is to connect with them on a personal level.  Meet with your representatives–at their local office, not Washington, DC.  Tell them your story, or the story of your loved one with CMT.  Bring information about CMT that you’ll find on the National CMT Resource Center.  Let them know how CMT affects people in their district, people they represent.  As a first step, you might consider calling the local office of your elected officials and ask for a meeting with their health care staff.  Exchange email addresses and continue to provide reliable updates and information for the staff in order to build a trusting relationship with key personnel.

Be specific.  Tell them how helpful the National CMT Resource is for people with CMT and for the community at large.  The Resource Center was funded by a cooperative agreement with the Centers for Disease Control and Prevention.  This kind of funding needs to be continued and expanded.  Let your elected officials know that without these kinds of resources, health care professionals are not able to treat or refer individuals for crucial early interventions that can maximize the quality of life for people with CMT.  We’ll continue to update this page for the latest specific advocacy initiatives that we need your help on.

Finally, take advantage of the many opportunities for advocacy.  In schools, civic organizations, even the grocery store, there are ways to increase awareness of CMT.  We believe this is the most crucial step, providing information and educating others about this disease.  Once people know about CMT, we will be able to build a strong community with a voice in the development of public health policy.