[Answer from Congressman Hefley regarding HCM]

Author: Debbie (---.ras11.coden-le3.alerondial.net)

Date: 10-25-02 22:51

Hi everyone!

I emailed Congressman Joel Hefley on Oct. 9, regarding HCM and athletes. Then posted a copy of my letter to him on this message board.

Today I received a reply by mail, and thought you all might be interested in reading it.

My letter from Congressman Hefley:

(Will skip the salutation):

"I received your comments on Hypertrophic Cardio Myopathy (HCM). I realize that this issue is one that is close to your heart. Thank you for sharing your personal association on such an important matter with me.

As you may already know, the days remaining in the 107th Congress are limited.

Nonetheless, I will keep your comments on file and recommend that you contact me once again during the beginning of the 108th Congress. In addition, you may want to send your comments to the committees that focus on healthcare legislation:

House Energy and Commerce Subcommittee on Health

2125 Rayburn HOB

Washington, DC 20515

Fax: 202-225-1919

House Ways and Means Subcommittee on Health

1136 Longworth HOB

Washington, DC 20151

Fax: 202-226-1765

Again, thank you for writing. I wish you and your family all the best and look forward to hearing from you in the future.

Sincerely,

Joel Hefley

Member of Congress"

I think it's a start! If we could all write to these committees and to our representatives, we might be able to affect some real change in how HCM is dealt with, not only in medical circles, but with athletic associations, too.

We need to get the word out about what a serious disease this can be, and we need some way to educate the general public.

Lisa, Sarah ... everyone associated with this site: Thanks for all your hard work, and personal interest in anyone who posts on this message board. I know you put many hours a day into it, and your work doesn't go unnoticed. You guys will change the future for many.

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[Re: Answer from Congressman Hefley regarding HCM]

Author: Sarah B.-Board Moderator (---.client.attbi.com)

Date: 10-26-02 11:23

Dear Debbie,

Thanks for sharing your letter.

The HCMA mission is to educate both the public and the medical community. We are currently working on getting the funding we need for some big plans. Becoming a member, coming the to the annual meeting, or just sending a few buck will all go a long way to helping us get the word out.

Take care,

sarah