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By
Kris McGourthy |
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Member
of Congress are always looking for "real people" to testify
about how their lives are affected by legislation. My
visit was in February, when NBIA Disorders Association President Patricia
Wood and I were in Washington to attend the Genetic Alliance conference to
learn more about the bio bank, which our association is joining as a
founding member. I called ahead to Kennedy's office and made an
appointment to chat about the stem cell legislation, which has been
stalled in Congress. I
prepared a letter of introduction, including pictures of my boys, articles
that had been written about them, a brochure on NBIA, along with the
organization's newsletter. I explained that stem cell research was
important because two of my sons have the disease, and a new child
born last year is a carrier. A fourth child is not affected. The stem
cells from my youngest were preserved at birth and are now being
stored for possible future use. U.S.
House and Senate members often travel to their home districts to meet with
constituents, either at public meetings or in one-on-one sessions.
In-district meetings are an option for those of you who can't travel to
Washington but want to bend your representative's ear. In Washington,
visitors don't always get to meet with the member of Congress; often a key
staff member is delegated to meet with constituents. Patricia
and I met with a legislative fellow, Jennifer Leib, who works on
health legislation. As it turned out, she was very familiar with
NBIA. She had volunteered at our first family conference in 2000 as a
graduate student at Johns Hopkins University! She was very helpful in
explaining how things work in getting a bill through Congress and how we
could check its status on the Internet. The
stem cell bill was referred to the Judiciary Committee a year ago and
could die there, but I let Jennifer know I'd be willing to testify at a
Senate hearing on its importance if they are looking for someone. I
would encourage each of you to consider introducing yourselves to your
U.S. representatives and senators. Let them know, either through personal
visits or letters, how you feel about issues that concern you. The
more they hear from the rare disease community about our needs, the more
opportunity they have to understand, learn and, I hope, be more
responsive to our needs. If
you would like to know who your representatives are and how to contact
them, visit the House of Representatives at: http://www.house.gov/writerep
and your Senators at http://www.senate.gov/general/contact_information/senators_cfm.cfm |