Grab your walking shoes–spring has arrived!

The trees are turning green, flowers are in bloom and the birds have started singing again. Here in the South spring has sprung and that also means that lots of planning is underway for the Tennessee PKU Foundation’s two spring fundraisers–a walk for PKU in Nashville on May 3 and another taking place in Knoxville on May 17.

As they have done in years past, these two walks—as well as a third organized for Memphis, Tenn., later in the fall—are organized to raise money in support of PKU research. Since its inception, the Tennessee PKU Foundation has raised more than $63,400 for individual researchers and those supported through the National PKU Alliance. Other funds raised by the foundation stay within the state to support camp and conference scholarships as well as newborn welcome packets.

On a national level, the National PKU Alliance’s Scientific Advisory Committee—comprised of physicians, researchers and clinicians—reviews proposals submitted by researchers who are working in the inherited metabolic disease field and awards grants to those committed to advancing PKU treatments and ultimately developing a cure. Those researchers receiving grants from the National PKU Alliance in 2014 were just recently announced. You can read the full list of recipients on the nonprofit’s website, but two examples include Dr. Shawn Christ, associate professor of psychological sciences and associate director of the University of Missouri’s Brain Imaging Center, and Dr. Kristen Skvorak from the University of Pittsburgh Medical Center. Christ is examining the effects of PKU on gray matter structures in the brain, and Skvorak has been pursing ground-breaking experiments in liver cell transplants for PKU in a mouse model.

Several other U.S. states are also member organizations of the National PKU Alliance and if there’s one nearby your home, I encourage you to support them in their own individual fundraising efforts. However, if you do not have an affiliation with any of these groups but still feel so moved to also support PKU research, you can contribute online via the Tennessee PKU Foundation’s walk registration website. Even if you cannot attend one of these events in person, you can still play a role in supporting PKU research.

–NM

Five ways to recognize National PKU Awareness Day through Giving Tuesday!

Last year, in recognition of first-ever National PKU Awareness Day, I created a wish list of sorts for what a national platform could mean for a rare genetic disorder like Phenylketonuria. This year, I decided to make a different kind of list – one that capitalizes on the spirit of giving.

The inspiration for this list came to me after hearing a radio announcer observe that after just coming through Black Friday and yesterday’s Cyber Monday, today is known as Giving Tuesday. I immediately thought, what better way to celebrate National PKU Awareness Day (which also happens to be today) than to give-back to one of the many PKU non-profit causes!

So on that note, here are just a few ideas for how you can celebrate five worthy causes in honor of both National PKU Awareness Day and Giving Tuesday:

The National PKU Alliance – Created in 2008, the National PKU Alliance was established to serve as a voice for PKU patients and families by focusing on a number of mission goals such as improving insurance equality, funding for peer-reviewed research and supporting the ongoing effort to find a cure. You can read more about this non-profit’s accomplishments in its 2012 annual report and tax deductible donations can be made through the National PKU Alliance website.

Bring Fanni Home – Anna Parker, a PKU patient/mom, and her husband Brandon have been trying bring home Fanni, a little girl in China, also with PKU, who had been abandoned on the public transit system at the age of four. The $30,000 price tag for international adoption can seem insurmountable; however, with the support of generous PKU community, we can help bring Fanni home to the Parkers. This Giving Tuesday/National PKU Awareness Day, consider making a $10 donation to this very worthy cause. Visit the Bring Fanni Home website for more details.

National PKU News – Located in Seattle, Wash., National PKU News is pushing its 25^th year anniversary for providing current and accurate news related to PKU. Virginia Schuett, the organization’s founder is a former PKU nutritionist and is also responsible for several other fabulous PKU resources like the Low-Protein Food List, Low Protein Cookery for PKU and Apples to Zucchini: A Collection of Favorite Low Protein Recipes. According to the National PKU News website, “newsletter subscription fees and sales from books provide less than 50 percent of the financial needs of the organization.”  Your donations to this multi-faceted organization will help it reach its 25^th anniversary and many more to come!

Cook for Love – This invaluable resource has been one of my favorite go-to resources for PKU recipes. Cook for Love is a culinary website created by Brenda Winiarski, mother of two PKU children. The foods she has created come as close to traditional, high-protein foods as any other I’ve seen. My mother has often joked that some foods on the Cook for Love website feel more like science experiments than a recipes, but honestly Brenda and her partners have done an amazing job mimicking food properties like the rise of a loaf without flour and the binding of a cake without eggs. Completely dependent on donations, all of the recipes posted to Cook for Love are free to access with the creation of a user name and password. A $25 donation will help ensure that Cook for Love can continue to maintain the website as well as the genius behind these tasty foods.

Support your local PKU organization – Many groups like my local Tennessee PKU Foundation support efforts similar to the National PKU Alliance but on a more regional level. These groups also rely on donations to educate and raise awareness about PKU and other metabolic disorders. The Tennessee PKU Foundation accepts donations via mail or you may also contribute online. Be sure to check out your local PKU organization and contact them to see how you can support them.

–NM

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.

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.

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