To All,
All of you either know Karen, or have been witness to her struggles and fights with her rare disease (Ehlers Danlos) and all the complications she has seemed to inherit. Many of you have seen her in different stages (good and bad), but I think you all have gotten the overall understanding of what living with a rare disease is like.
She is in the hospital quite a bit. We have to travel all the time, which has snowed us for life, financially. Her life has been in jeopardy I don't know how many times - she has been incoherent for days, has thrown clots throughout her brain, has had non-stop anaphylaxis, has almost completely dislocated her neck, and other issues. She has fought to have a normal as a life as possible; to live, succeed, and above all, help others (that is apparent on her own www.sweetlemonpies.com blog site) despite her illness and tribulations.
As a family, we get that this is part of the drill and the cards we've been dealt; we have no choice but to play them to the best of our ability. But over these last eight years, there have definitely been incidents here in the state of Massachusetts that have made her life and her struggles much more difficult - incidents caused by ignorance of her diseases, lack of protection put in place for kids like her, and other problems.
We want to change that.
After not making it through the state legislature last year (despite all the campaigning we did), The Act to Create a Rare Disease Advisory Council is up again and we are begging to have all of you call, write, or email your State Representative or Senator and ask for their support of this docket. While I don't think this Council will make things fabulous again and perfect, it is a start, and it desperately needs to happen for this community.
To make it easy, here's the pertinent information:
• Docket #3712; An Act to Create a Rare Disease Advisory Council
• Your Representatives can be found (with all contact information) at the following link by simply putting in your information: https://malegislature.gov/Search/FindMyLegislator
• Obviously, a personal story or request will probably hold more weight - even an "I know someone with rare diseases, so please support Docket #3712.”
We need this to be co-sponsored by other representatives and senators again this year by February 3 (I just heard) to have another chance of it being presented as a bill, then hopefully this year, passed as a state law. It would be really, really cool if Karen's State Senator, James Timilty, or her State Representative, Shawn Dooley, would jump in and help.
Please, please help.
Sincerely,
Aurora Richards-Stipnieks
