Hello to our family and friends!
As you all know, Vivi has a rare metabolic condition called GLUT1 DS. We are excited that our family will be attending the first National GLUT1 DS Family Support Conference on July 24th in Chicago. This will be our first opportunity to meet other families living with GLUT1. We will also hear lectures by the preeminent researchers in GLUT1 to include the doctor who discovered the disorder (Dr. DeVivo). Since there are less than 150 people in the world who have been diagnosed with GLUT1 there is no national organization to help with funding. All of the families attending the conference will be covering the expenses for the researchers to come to Chicago.
In an effort to lessen the impact on each family, a number of us are holding fundraisers. We're partnering with the Colleen Giblin Foundation (http://www.colleengiblinfound.org/) to raise funds for the conference with any additional monies remaining going directly to GLUT1 research. Please help by sponsoring Vivi to attend the conference. Any amount you can send would help Vivi directly. You can make checks out to Rachel Kuypers and mail it to our home, or send money via PayPal to rachkuyps@yahoo.com. Ryan & I will then write one big check to the Colleen Giblin Foundation.
As a bonus, GE Healthcare (Ryan's employer) will match the donations. Our family's goal is to raise $3,000 (which will become $6,000 thanks to GE) by June 30th. We will keep you all updated about our progress along the way! You can also send a donation directly to the Colleen Giblin Foundation and get a tax deduction receipt. To ensure funds are used for GLUT1 please use the address below when sending your donation.
Colleen Giblin Foundation
Colleen Giblin Foundation
restricted for:
Glut1 Conference & Research
690 Kinderamack Rd, Suite 104
Oradell, NJ 07649
As a fun bonus anyone who donates will get their name in a drawing for one of my minky blankies. It will be a patchwork blankie measuring 60"x72" and Vivi has rated the fabric "comfy & cozy" and it is so soft you'll want to cuddle up in it right away. I'll ship the winner the blankie by August 1st.Vivi, Ryan and I really appreciate any help you can provide. Vivi's our sweet, silly, smart and sassy girl and we hope that through research someday she'll get to do everything that other kids can do.
As a fun bonus anyone who donates will get their name in a drawing for one of my minky blankies. It will be a patchwork blankie measuring 60"x72" and Vivi has rated the fabric "comfy & cozy" and it is so soft you'll want to cuddle up in it right away. I'll ship the winner the blankie by August 1st.Vivi, Ryan and I really appreciate any help you can provide. Vivi's our sweet, silly, smart and sassy girl and we hope that through research someday she'll get to do everything that other kids can do.
Love, Ryan, Rachel, and Vivi
The Kuypers Family
2340 S. 57th StreetWest Allis, WI 53219
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