Cushing’s Awareness Challenge, Day 1: Rare Disease Congressional Caucus Briefing

Cushing's Awareness Challenge 2013

Cushing’s Awareness Challenge 2013

The Challenge is back!

This year, I’m doing something w-a-y outside my comfort zone for Cushing’s Awareness.

A while ago, I got this email:

Rare Disease Congressional Caucus Briefing

Good morning Mary:

I hope everything is well.

I would like to invite you to join us at the Rare Disease Congressional Caucus briefing scheduled for April 2013. The final date is still being discussed but we are looking into two possible dates of either April 16th or April 18th. The meeting will take place in Washington, D.C. and will be attended by members of the Rare Disease Caucus including co-chairs Rep. Joseph Crowley and Rep. Leonard Lance.

As you may know Rare Disease Congressional Caucus is a forum for members of Congress to voice constituent concerns, share ideas, and build support for legislation that will improve the lives of people with rare diseases. The goal of the meeting in April is to educate the members of the Caucus about rare pituitary disorders, including Cushing’s Disease – area that has received little to no recognition among legislators. The meeting will serve as an opportunity to raise legislators’ awareness about multiple issues that patients with rare pituitary diseases, such as Cushing’s disease and Acromegaly, face in their everyday lives.

In preparation for the meeting we drafted a Resolution that addresses some of the key challenges for the patient community including long diagnostic delays, limited treatment options, difficulty finding physicians or treatment centers with expertise in their disease and as a result – a  diminished quality of life for patients. Would you be willing to have a look at the draft in the attachment and provide your feedback? Your opinion as a leader of the patient community and expert in Cushing’s disease would be highly appreciated.

I sincerely hope that you will be able to join us at the meeting to share your perspective and talk about the work that you are doing to help patient afflicted by Cushing’s disease live happier and healthier lives.

Please feel free to call or email anytime if you have questions or if you would like to discuss this further. I look forward to hearing back from you soon.

Regards,

Even though I’m absolutely terrified of speaking in front of groups (or singles!) I’m going to do this. What a fantastic opportunity to get the word out there for Cushing’s!

Turns out this will be April 16 – wish me luck!

maryo colorful zebra

5 Responses

  1. Mary!! Tried 3x unsuccessfully to share your wonderful news on FB about your RICHLY deserved invitation to be our Congressional spokesperson!! Wow!!! Will be glued to my computer on the 16th waiting to hear your thoughts on the outcome 🙂 Wish I weren't so computer illerate and could figure out how to spread the word; So sorry 😦 😦 😦 XXX
    o

  2. Thanks so much for your kind comments, Elisabeth! I sure hope I don't end up stammering and stuttering 🙂

  3. Mary, don't worry about stuttering or stammering. Just be your authentic self and think about the issue and whey you are passionate about it. That is what will come through, even if you have any speech issues. Thank you for getting this to attention of congress. My husband and I spent 30 plus years trying to discover what was wrong with him. It turned out to be Cushings Disease. I don't want other people to live through what we lived through because of the lack of knowledge and resources. You rock!

  4. […] Cushing’s Awareness Challenge, Day 1: Rare Disease Congressional Caucus Briefing (cushieblog.com) […]

  5. […] Help Grow the Rare D… on Cushing’s Awareness Chal… […]

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