Today was too good not to share!!!

I had a meeting with my congressional representative, the honorable Van Taylor to discuss rare disease advocacy at the state and national level.  Rare diseases are considered too rare to care by pharma, government, and even some medical professionals.  Our lofty aspirations require the support of an army.  Luckily, Congressman Van Taylor served in the Iraq War and deeply understands the power of the community.  He is passionate about ensuring free-market principles drive pharmaceutical prices down by increasing competition, has served on a variety of committees forming healthcare policy, and prioritizes his constituents. 

Riley’s preschool was canceled this week due to substitute teacher shortages.  I decided to bring my tenacious, brown-eyed little girl with me for this memorable meeting.  I chose a classic knit dress with leggings and a matching bow for Riley’s hair.  Moments before we left, Riley “surprised” me by covering herself in marker.  Riley looked like Mel Gibson from a scene in Braveheart.  She’s on an artistic kick right now and has been coloring the walls, herself, and our cat for a couple of months.  I did not want to cancel the appointment and there was no chance of cleaning Riley.  We were going as our authentic selves.

Congressman Taylor burst into laughter as we entered the conference room and asked Riley what happened.  Riley said she did it because she wanted to do it and she likes art.  The Congressman has 3 girls of his own and took a picture of Riley to show his family.  I gave him an overview of the gene therapy we are developing for children with SLC6A1 and the issues facing the rare disease community.  Congressman Taylor was amazed by the scientific innovation and had the compassion of a father to 3 girls.  Riley thanked him for helping her twin brother, Maxwell, and best friend.  The smile on everyone’s face says it all. 

A day we will not forget. 

Categories: Community

SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.


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