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Saturday, February 25, 2012

It's all coming together.

Bit by bit the pieces are falling into place.

I’m happy today Jeremy and Jonah come back from a visit from Grandma and Grandpas. I can’t wait to see my boys, the apartment is to quiet without them. The bed to big and the floor to clean. It was nice at first, got lots of work done... for tomorrow we head to DC for a few days.

Monday, February 20, 2012

Rare but Strong Together, by Aunt Kelly

My name is Kelly Weishaar. I am married to Jeremy's brother, Peter. I am Jonah's aunt. He is my only nephew and my children's only cousin.

I live in upstate New York, far away from the excitement of the Big City. Also, far away from Jonah, Jeremy, and Jill. Many of Jill's blog readers will understand the feeling of "helplessness" experienced by the family and friends of the people who are diagnosed with, or raising a child with, a rare and deadly disease. My family is too far away to show our support by attending fundraisers, hanging up flyers around the neighborhood, or flying across the country to attend conferences with the scientists who will eventually find a cure. We would do these things, if we could, but it is not a possibility.

Wednesday, February 8, 2012

Hi Friends...

Today Congressman Ed Towns went before the House and spoke on behalf of our family and all the other families afflicted by ultra-rare diseases. Here is the clip to the 5 min speech he gave in support of the ULTRA-ACT.
http://www.c-spanarchives.org/appearance/601249385

I can't thank Congressmen Ed Towns and Cliff Stearns enough for shedding some light on our situation! Today I'm re-posting the blog about the importance of the ULTRA-act. Please read and show your support by letting your Congressman know how important this legislation is to our Nation.

Please support the ULTRA act!