Tag Archives: National Day December 3

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

PKU Awareness Day, Giving TuesdayLast 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:

National PKU AllianceThe 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

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 NewsNational PKU News – Located in Seattle, Wash., National PKU News is pushing its 25th 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 25th anniversary and many more to come!

Cook for LoveCook 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.

Tennessee PKU FoundationSupport 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

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National PKU Awareness Day: My Wish List for the Future of PKU

National PKU Awareness Day, December 3, Phenylketonuria, National PKU Alliance

We have all heard about specific days, weeks and even months that are set aside in recognition of something special. Today – December 3, 2012 – is the first-ever National PKU Awareness Day. What does that mean for the PKU community?

Here are a couple things to know first about these special time periods of distinction. In the marketing realm, there’s a difference between national days and national awareness days. National days are typically reserved for organizations lobbying for commercial interests such as National Mutt Day on Dec. 2 which reminds potential dog owners to adopt mixed-breed pets. National awareness days, on the other hand, are used to identify health-related issues; some of the more well-known health awareness campaigns being in support of breast cancer and heart disease.

As a rare genetic disorder with no cure, PKU certainly falls within the national-awareness-day category. Receiving a national awareness day distinction for PKU required the support of the U.S. Senate, which unanimously passed the resolution on Sept. 19, 2012. Senators Johnny Isakson (R-Ga.) and John Kerry (D-Mass.) co-sponsored the resolution, and the National PKU Alliance, a coalition of local, state and regional organizations supporting PKU families, undoubtedly played an integral role assisting the two senators as they sought buy-in from their senatorial colleagues.

Receiving national recognition for PKU is rather moving and amidst all the excitement, I couldn’t help but daydream just what this elevated, national platform could mean for PKU. Call this a PKU National Awareness Day Wish List if you like, but here are just a few things I hope will change over the coming years with more attention brought to this issue:

  • More scientists will know of and perhaps be inspired to study phenylketonuria.
  • More funding may be allocated for academic research in support of PKU.
  • Policy decision makers in Washington D.C. will better understand the importance of mandatory newborn screening and may eventually pass the Medical Foods Equity Act.
  • Insurance coverage will increase at both the national and state levels.
  • Any confusion that the PKU “diet” is cosmetic and applies to weight-loss will be eliminated.
  • PKU clinics across the nation will improve thanks to shared best practices and individualized patient care.
  • We may someday gain a better understanding for the differing degrees of severity found in PKU.
  • The list of pharmaceutical drug therapies that are available for the treatment of PKU may increase.
  • We could also see a greater variety of low-protein foods made available to patients…maybe some even available in common grocery stores.
  • PKU patients and their families will experience a greater sense of community.
  • We may improve upon the resources made available to women facing maternal PKU…and ultimately increase the number of successful pregnancies.
  • PKU will have a greater, national identity; one that “adds a face” to what is otherwise an obscure genetic disorder.

I do not think it’s at a stretch to assume that through all of these “blue-sky” goals, National PKU Awareness Day could one day lead to a cure. With that in mind, what other items would you add to this wish list?

–NM

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