A Month of Distinction: May is PKU Awareness Month

Each October, the Susan G. Komen Foundation conducts a media and fundraising blitz in an effort to raise overall awareness for breast cancer and to help fund ongoing research. The same can be said for the American Heart Association and its trademark American Heart Month which takes place every February. While both of these conditions impact far more individuals than a rare genetic disorder, PKU also has its own month of distinction—May.National PKU Awareness Month, Phenylketonuria, May, PKU Awareness Logo

As is the case with most health-related awareness campaigns, National PKU Awareness Month seeks to raise the condition’s profile by keeping it front-and-center in the minds and hearts of everyone. It becomes a time to examine critical issues such as the challenges we face in obtaining insurance coverage or the importance of supporting mandatory newborn screening. Media entities, with their interest in spotlighting human interest narratives, oftentimes serve a catalyst for educating the public, swaying public opinion and, in some cases, influencing policy-makers. Supporting National PKU Awareness Month is important for all these reasons, but perhaps nothing is more inspirational than knowing that all fundraising dollars collected in recognition of this effort will help to fund ongoing scientific research…research that might one day provide the clues for how to cure PKU.

I recently had the pleasure of participating in the Tennessee PKU Foundation’s 2012 Knoxville Walk for PKU. The event was hosted at the Knoxville Zoo and walk participants were asked to raise money for ongoing PKU research and support activities. With more than 165 people in attendance, the event raked-in an estimated $1,400–an amount that adds-on to the $46,000 the foundation has already contributed to PKU research since 2007.

2012 Knoxville Walk for PKU

I’m pictured far left with other PKU patients and family members just moments before the 2012 Knoxville Walk for PKU kicked off at the Knoxville Zoo.

Other similar events are either planned for or have already occurred in other regions across the state. In fact, both Memphis and Nashville have organized their own Walks for PKU. Imagine for a moment this same effort multiplied throughout the U.S. and even across the border into other nations. That is the impact National PKU Awareness Month has on this genetic disorder!

With Memorial Day Weekend right around the corner, May has almost passed us by. However, the good news is the effort to promote PKU awareness does not have to stop at the end of the month. That is because just purely through our association with PKU, whether we are PKU patients or know someone with PKU, we all have the opportunity to serve as ambassadors for the cause. So tell me, did you recently help commemorate National PKU Awareness Month? If so, what sort of activities or actions in your community did you take part in?  Please comment below and share your creative ideas. Perhaps we can learn from one another in terms of which efforts work best at garnering the most attention for PKU.

–NM

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Filed under Conferences & Events, Research

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