About APF | What is PKU? | Our Team| How to Get Involved | Support Us
Alliance of PKU Families’ mission is to promote and advocate the welfare of those who are affected by PKU in their daily life and their families, promote the nurturing and education of learning to navigate a restrictive diet and supplemental therapies, and to build a supportive environment in WVA, VA, MD, PA, and DC.
Why come to our events?
“Spending time together.”
“Opportunities to talk to others that understand PKU life!”
“Friends, interaction with other PKU people”
“Community”
About Alliance of PKU Families
The Alliance of PKU Families (APF) began in 1994. It was founded by parents of children with PKU. Their goal was to promote the health and well-being of persons with PKU. The inaugural event, Camp Huber for people with PKU and their families/support persons, offered educational experiences. It also included networking and entertainment. PKU food was on the menu and no explanations of diet were needed.
Over the years, APF expanded their goals and reach. They now host several events throughout the year. These events engage about 100 people from across the Mid-Atlantic and sometimes further. APF works to make camp and other events affordable for all families. Many already struggle with high costs of insurance, medical food, formula, and medication. This ensures they are part of the APF community.
Affiliated with the NPKUA
What is PKU?
Phenylketonuria (known as PKU) is an inherited metabolic disease. It affects the brain through increased levels of a substance called phenylalanine (Phe) in the blood. Phe, an amino acid, is a building block of protein. It is found in all proteins. It is also present in most foods and some artificial sweeteners. Infants are diagnosed with PKU through newborn screening followed up by blood work at a clinic. Those affected by PKU are on a low protein diet for life. Without remaining on diet, phenylalanine will build up in an individual with PKU’s bloodstream. This accumulation will travel to their brain. It causes loss of IQ, neurological problems, and more.
Please see more information here: https://www.npkua.org/What-is-PKU/About-PKU.
Our Team
Our expert team has diverse backgrounds, which fuels the Alliance of PKU Families. It’s an exciting time to join us as we expand our impact! Last year, we hosted 2 events with over 100 members and a total of 6 events. We also hold a monthly support group for PKU adults.
Current Board of Directors:
President – Melissa Scobell
Treasurer – Kathy Temple
Corresponding Secretary – Kendall Temple
Vice President – Tyler Seth
Recording Secretary – Susan Shui
Development Director – Brad Dickson
Nutrition Coordinator – Rachel Jennings
How to get involved:
We are always looking for volunteers and support!
State Leaders
APF appoints leaders for each state committee to effectively represent the specific needs of their respective states, including the coordination of at least one meetup within their designated area. We are currently in search of representatives for Virginia, Washington, D.C., and West Virginia.
Committee Members
Our standing planning committees are at least 1 year commitments. We are currently searching for individuals interested in supporting grant/sponsorship writing and our virtual food pantry. We also are looking for an individual available during the daytime to go to quarterly NPKUA meetings.
Thank you for your interest in joining our remarkable team! We deeply value each and every person’s time and dedication. Together, many hands can create extraordinary change. This organization is not just important; it’s a beacon of hope and impact in our community. If you have even a single hour to spare, we would be thrilled to hear from you and rally your support in this transformative journey!
Please email mapkuf@gmail.com.
Support Us
We extend a formal invitation for you to invest in the PKU community. Your generosity holds significant value for our members across MD, VA, WVA, PA, and beyond. Your esteemed donation will contribute to the support of various initiatives, including community meet-ups, virtual educational events, Camp Huber, and other endeavors. We are sincerely appreciative of your support.
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