PKU Awareness Month Challenge supporting National PKU Alliance
PKU Awareness Month Challenge
#mypkustorymatters
PKU Awareness Month Challenge supporting National PKU Alliance
A Story That Matters - Meet the Raitz Family
"The reality of having three kids with PKU means spending lots of out-of-pocket dollars. Right now there isn't much help. In some states, PKU families have had luck with their insurance companies to help with the cost. We have not been that lucky. We feel blessed that there are low-protein food options for our kids, but we're dreaming of the day that the Medical Nutrition Equity Act is passed and gives nutrition equality to people with rare diseases!"
- Jason Raitz, Dad of 3 kids with PKU, Florida
A Story That Matters - Meet Laura
"While in college, I was going to class full time, working part time, and was a collegiate athlete, all while struggling to afford medical formula that was so necessary for me to feel my best and think clearly.
After many months of fighting with my insurance company, they declined to cover the cost of medical formula. I was devastated. I knew going without was not an option, so I rationed my emergency supply of formula to make it last as long as possible until I could purchase more for myself.”
-Laura Hines, Adult with PKU, Texas
May is National PKU Awareness Month
Let's make change happen!
Cost is often a barrier to receiving medically necessary foods. Since 2009, the NPKUA and tireless members of the PKU community have been working together to help pass the Medical Nutrition Equity Act (MNEA). The MNEA provides coverage, under all Federal health programs and private insurance, for medical foods and low protein modified foods.
It's time to add your voice to the fight. We're asking you to step forward, and tell your story to raise awareness and help every person in the country have access to the medical food they need. You will make a difference! "Your Story Matters... Tell it!"
It's easy!! Just REGISTER to accept the Challenge to tell YOUR story, then upload your photo OR donate, OR BOTH!! Use #mypkustorymatters. Earn points for completing the challenge, recruiting others to take the challenge, posting on social media using #mypkustorymatters, and fundraising.
Let's see that creativity shine through! Now through May 31, we want to flood social media with #mypkustorymatters. Share, share, share, and encourage friends and family to share! The more active you are, the more points you will receive. The top 2 point individual point leaders will receive a FREE PKU Awareness Month premium t-shirt.
Please consider donating as well. Not only do you get additional points, but your gift will be matched dollar-for-dollar, up to $25,000! Thanks for accepting the challenge. Have fun and don't forget... "Your Story Matters... Tell it!"
#mypkustorymatters