About Move Your Pheet for PKU!
In May of 2023, we are celebrating NPKUA’s 15th year anniversary and National PKU Awareness month. Move Your Pheet will be a nationwide fundraising event that can take place anytime during the month of May. Move Your Pheet can take on any form you like – just as long as you move your feet! This website provides you with tools to promote and manage your own event, whether it’s a team run, a walk around the neighborhood that includes dogs and strollers, a bike ride, a night glow walk/run, a relay swim at a local pool or something you make up (like a jump-rope-a-thon or obstacle course).
These individual or team fundraisers are designed to bring awareness to PKU and raise money for NPKUA’s For PKU, By PKU a Tailored Support Program, From Connecting for a Moment to Connecting with a Mentor. The For PKU, By PKU Mentor Program will provide as-needed assistance to our mentees ranging from a quick phone call or email to weekly check-ins or on-going text support.
Currently the For PKU, By PKU Mentor Program is made up of 15 mentors from across the country and at various ages and stages of their PKU management. The Program is led by an Advisor who is a Pediatric Neuropsychologist with expertise in rare diseases along with our Executive Director and NPKUA Staff members. Our goal for 2023 and beyond is to expand the program to be able to connect and support more individuals in our community and with your help, we can do this!
The Move Your Pheet challenge is the perfect way for friends, families, neighbors and colleagues to unite to support our NPKUA Mentors. All while having fun and promoting good physical and mental health.
1. CHOOSE A WAY TO MOVE YOUR PHEET: Choose your own way to “move your pheet” by selecting a walk, run, swim or bike.
2. REGISTER: Register for the event of your choosing and create your own personal fundraising page to raise funds for the activity of your choosing.
3. SET UP YOUR FUNDRAISING PAGE: Once registered, add your fundraising goal and update your personal message.
4. ASK FOR DONATIONS: Use your fundraising page to ask for donations. Provide the link to your page in any email, text or social post you send out about the event.
5. MOVE YOUR PHEET: Anytime throughout the month of May, walk, run, bike or swim or anything that gets you moving
6. SHOW US YOUR MOVES AND SHARE: Please share photos of yourself preparing for or participating in your Move Your Pheet event on Facebook and Instagram using the hashtag #moveyourpheet and upload your photos to your personal fundraising page. We have created virtual tools to help you promote the event such as signs and frames that can be added to photos and shared on social media!
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WHAT IS PKU?
PKU is an inherited disease where the body is unable to properly process phenylalanine (an amino acid found in all protein). If undiagnosed or untreated, the buildup of phenylalanine in the bloodstream causes severe and irreversible brain damage. Because it is such a rare disease, the financial support necessary to advance research falls on the families and individuals who care passionately about pursuing a cure; it was this personal dedication that formed the National PKU Alliance. With your help, our fundraising efforts will support this critical effort. Seldom has a grassroots effort made such a difference in the treatment of a rare disease.
ABOUT THE NPKUA
The National PKU Alliance (NPKUA) works to improve the lives of individuals with PKU and pursue a cure. Created by local groups who recognize the importance of a national agenda, the NPKUA is a vital voice in the PKU community. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community, and industry to make a difference in the lives of people with PKU.
The NPKUA is a vital voice for the PKU community. We work towards expanding PKU research and accelerating the timeline for a cure by investing in peer-reviewed and targeted research. We provide education and support for people living with PKU through programs such as For PKU, By PKU Mentor Program. We are the national voice for advocacy at the federal level—at the NIH, FDA and the halls of Congress.
HOW DOES MY DONATION OR FUNDRAISING EFFORTS HELP?
Funds raised during the Move Your Pheet challenge will go towards supporting the For PKU, By PKU Mentor Program From Connecting for a Moment to Connecting with a Mentor. Currently the program is made up of 15 mentors from across the country and at various ages and stages of their PKU management. The Program is led by an Advisor who is a Pediatric Neuropsychologist with expertise in rare diseases along with our Executive Director and NPKUA Staff members. The group meets monthly to receive formal trainings led by our Advisor and discussion-based learning such as sharing of best practices and PKU resources and information. All mentee information is kept confidential. Outside of the group meetings, mentors work one-on-one with their mentees to provide support in a variety of ways from texting and emails to monthly calls and check-ins.
Our goal for 2023 and beyond is to expand the Mentor program to be able to connect and support more individuals in our community and with your help, we can do this!