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Saturday, September 17, 2011

My Road To Advocacy...

I was selected this summer to participate in a federally-funded program called 'Partners in Policy Making' which is a leadership training program that helps family members learn the history of disibility law and how to become an effective advocate. Here in South Carolina, it is run through a group called Pro Parents, and they select about 15-20 people a year to participate. I get to travel to our state capital for two day training sessions that will occur over five months, learn about the law-making process at local, state and federal levels, meet speakers who are experts in topics essential to advocacy, and hopefully learn how to effectively advocate so I can better help Rebekah and others like her!   Anyone can petition to participate in the program, and if it is not available in your state as a hands-on learning process, there are free online tutorials at the Partners in Policy Making website that cover the technical information learned during the training.

I FINALLY got around to creating and ordering my own personal advocacy cards in August! It has only taken me a year of talking about it to finally get it done. The hard part was coming up with exactly what I want the cards to convey in such a small space. Because my passion is for advocating for children with trisomy 18, 13 and similar conditions, I chose several organizations that support the trisomy journey - especially those in the journey with living children. I obviously couldn't include every organization, but I can say that these organizations make a difference in the lives of families that choose life for their trisomy kids. Of the amount of funds that goes into these organizations, almost all of it goes right back out to supporting families - you can see the fruits of their labor. The list of people they have helped is long, and their leadership is full of integrity. I have been personally helped by all of them -
  • Trisomy Advocacy Group helps give a voice to those who have none, and helps connect new parents to parents willing to support and help them face doctors and hospitals not trisomy frirendly.
  • Noah's Never Ending Rainbow helps families with living children and bereaved parents who need a little financial help. They helped fund 14 families attending the SOFT conference this past summer - we were one of them.
  • Support Organization for Trisomy (SOFT - provides a way for trisomy families to connect - no matter where they are in the journey. They put out quarterly publications with lots of useful medical information, and have medical advisors on board that are 'experts' on trisomy kids. There is an annual conference that is incredible - for both those with living children, and those who have lost children. It truly is a wonderful support organization.
  • Hope for Trisomy offers comforting Gemma's Bears and Payton's bears to trisomy families, funds research projects, and helps advocate on behalf of these children.
  • There is another organization that I wish I would've added - Prenatal Partners for Life. They have helped countless friends of mine, and the founder recently lost her full trisomy 18 son. They support families with adverse prenatal diagnosis that choose to carry to term.
This is the front of the card...

...and this is the back side.
There are many other organizations that support the trisomy community, I listed them in this blog entry months ago.  But the ones that made it to my cards are the ones that have supported me most in my journey.

I would really love to be able to go to medical conferences, universities, and any place else where I can show off Rebekah and her trisomy friends and explain that life-limiting does not mean incompatible with life, nor does it mean there is no quality of life. These children are special and have many things to teach us. Rebekah and I are looking forward to our advocacy opportunities and how we can make a difference for trisomy 18 awareness. I start my Partners in Policy Making classes in October - and I can't wait!

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