Low-Protein “Farm to Table” Cooking Event
Join Chef Manuel for a tour of his farm, where you’ll harvest your own vegetables and watch him turn them into delectable, simple, and healthy dishes for PKU!
Sunday, September 12, 2010
1:00 – 5:00 PM
Manuel’s Bread Café
North Augusta, SC
RSVP to Erica Stelten, RD, LD (BioMarin) by September 3rd.
estelten@bmrn.com or 404-242-9720
View event invitation and directions >>
Ultimate PKU Day
Thank you to everyone who joined us on June 5, 2010 for our Third Annual Ultimate PKU Day! Approximately 50 Ultimate Frisbee players participated in the tournament, with prizes going to the players who collected the most donations prior to the event. PKU families from Georgia, Alabama, and Tennessee spent the day socializing and sampling low protein goodies. We were thrilled to see familiar faces and to welcome new families to Georgia PKU Connect!
Tucker Youth Soccer Association generously donated use of their facilities for our event, and donations from Applied Nutrition, AT&T, BioMarin, Cambrooke Foods, Direct Technologies, Ener-G Foods, Geographics, Heck Yeah!, Prographics, Turtle Mountain and Vitaflo provided snacks, prizes, and t-shirts for players and families. This year, we successfully met our goal of raising $10,000 to improve the lives of PKU families in our region!!!
Do you have an idea for a fundraiser or social gathering?
Click here to send us an email – we want to grow with you in mind!
Do you want to host a fundraiser? Check out the photos below from Lucas’s Lemonade Stand for PKU! Congratulations to Lucas and his family for raising funds for Georgia PKU Connect to support Emory University’s Metabolic Nutrition Program, Local Community Support, Advocacy and the National PKU Alliance Research Program. Email Julie to coordinate a local fundraiser!
Past Events
Ultimate PKU Day, June 5, 2010
View event photos >>
Lucas’s Lemonade Stand for PKU, May 8, 2010
View event photos >>
Holiday Meet-and-Greet, December 13, 2009
View event photos >>
Georgia/Tennessee PKU Town Hall, September 19, 2009
View event photos >>
Ultimate PKU Day, May 16, 2009, Raised $6,418.35!
View event photos >>
Taste Connections Cooking Workshop, February 7, 2009
View our group photo >> |
Advocacy Update!
Medical foods legislation has been introduced in the U.S. Senate and House of Representatives!
Senate bill:The Medical Foods Equity Act of 2009 (S.2766) was introduced by Senator John Kerry of Massachusetts and original co-sponsor Senator Robert Casey (PA) on November 10, 2009! To read the bill and view the current list of co-sponsors visit www.thomas.gov, select Search by "Bill Number" and enter S.2766 - we need your U.S. Senators to sign on!
House companion bill:The Medical Foods Equity Act of 2010 (H.R. 4926) was
introduced by Representative Tammy Baldwin of Wisconsin and original
co-sponsors Jared Polis (CO-2), Hank Johnson (GA-4), John Sarbanes (MD-3)
and Chet Edwards (TX-17) on March 24, 2010! To read the bill and view the
current list of co-sponsors visit www.thomas.gov, select Search by "Bill
Number" and enter HR.4926 - we need at least 100!
To look up your Senators and House Representative go to:
http://www.npkua.org/index.php/your-legislators
Please help move S. 2766 and H.R. 4926 forward by asking your legislators to be a co-sponsor!
Helpful Documents
House Advocacy Guide, Senate Advocacy Guide, Federal Legislation Talking Points, Medical Foods Letter from HHS, Medical Foods Legislative Outline, Sampling of PKU Stories, SERC Patient Stories, Endorsing Organizations, Letter from The American Academy of Pediatrics Back to Top |
