By Michelle Forman, Senior Media Specialist, APHL
If you have PKU or at all involved in the newborn screening advocacy community, you have likely heard of Kevin Alexander. He’s something of a celebrity in this world. What makes him so well known and popular? Kevin’s story is similar to many other newborn screening stories. His parents learned he had PKU when he was only nine days old; he was put on the PKU formula and eventually began a low-protein diet. What’s special about Kevin isn’t his story (sorry, Kevin!); it’s that he tells it. He tells it a lot. In doing so, he has helped a lot of people whose lives have been impacted by PKU.
For 31 years Kevin knew no one else with PKU. He was a videographer and documentary filmaker by profession, so in late 2011 he decided to use his skills to make a film about himself and PKU for the very first time. His video went viral and the rest is history. In a little over a year Kevin has become one of the most well-known and well-loved newborn screening advocates around.
Why did Kevin decide to begin talking about his life with PKU? He says he has learned several lessons over his lifetime and realized they likely applied to anyone living with a rare disease. He wanted to both help people and to give thanks to those in the newborn screening community who literally saved his life.
“Thankfulness has become my lifestyle… Every child born with a rare disease should have the same opportunity at life that I have had. That’s why Rare Disease Day is so important. We need to continually remind people that rare diseases exist, not just to invoke sympathy, but to encourage people to take action. We need to continually remind policymakers of the value of newborn screening which detects various rare diseases. We need to encourage further scientific research to make sure that any child born with a rare disease can have a healthy life. To see any of these dreams become a reality we must continually advocate for rare diseases.”
Kevin, we’re glad to have you on our team!
Check out Kevin’s full blog post for Rare Disease Day, Lessons I’ve Learned Living with a Rare Disease. And for his full story, watch his film, My PKU Life.
My grandson has PKU disease. In learning how to cope and treat him, my daughter has become very active in the PKU foundation activities. She is organizing a run to support research for PKU Disease and the children who have it. The following link is the page where the run is being advertised:
If there is any way you would be able to help sponsor this activity it would be very much appreciated. It has taken a lot of work and dedication to organize this event, as you can well imagine, and my daughter is basically on her own organizing this.
Please let me know if you receive this, and if there is any way you can help.
Thanks so much for connecting with me. While I can’t contribute financially at this time I would be more than happy to help spread awareness of the event through my PKU Facebook page: http://www.facebook.com/PKULife.tv. You can send me a message there and I will share whatever info I can.
[…] Kevin Alexander Speaks Out About PKU and Rare Disease Day: For 31 years, Kevin didn’t know anyone else living with PKU. He decided to put his professional skills to use by telling his story on video, turning Kevin into an immediate advocate. “Thankfulness has become my lifestyle… Every child born with a rare disease should have the same opportunity at life that I have had.” […]
I live in Virginia, USA, I am 54 years old and have a neighborhood friend with three young boys two of them have PKU. The mother is having a terrible time trying to get the formula that she so desperately needs, do you have any information that may help her ?