New News

First and foremost, my friend Nicole (Nikki) Seefeldt finally got her lungs on December 2nd after a very long listing. Hers was the very first blog that I followed here on WordPress, and she suffers from not one, but two, rare diseases. Her listing for new lungs was much longer than she anticipated but she did not let that deter her from staying on course with her exercising to make sure that her recovery got off to the best start possible. Please, if you have no medical reason that your tissue or organs would be rejected, sign up to be a donor. All of my friends who have been organ recipients are eternally grateful.

Please check out her blog and progress here: As I Live & Breathe

Second, I was considering traveling to Washington D.C. in February to participate in their Rare Disease Week to learn how to effectively communicate with lawmakers. I applied for a travel grant and was participating in a large conference call where we were going over the details of the week and what would be awarded if we got the nod on our travel scholarships when the woman running the call received a notification that the Senate passed the bill for the 21st Century Cures. A week prior the bill had passed through the House. While we were on the call, she had started crying and then had to explain that it had taken two years to get the bill to pass – and with very little resistance from either major political party. The bill passed in the Senate with only five opposed. She then stated that President Obama indicated that if the House and the Senate passed the bill, he would absolutely sign the bill into law, with no hesitation.

Global Genes has published an article and hosted a podcast with me as a guest in the past. They are also the major partner in the rare disease week in February in D.C. that I may or may not attend – I may not be able to handle the grueling travel and having to be upright. But they have been fantastic about getting the word out about this bill and about keeping all of us connected in the rare disease world.

A lot of rare diseases are diagnosed during childhood, as is what happened with Nikki. However, I have rare diseases that haven’t been recognized until adulthood, and even one that we’re still not sure of. Some children don’t survive to adulthood. All of us have a better chance at a quality life if we have medications and treatments that don’t require a decade of testing before they are approved. There is no reason for us to stop advancing science to find answers. We will never run out of discoveries.  

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