On September 28, 2024, Nashville hosted the most successful Lifting the Limits for PKU since these NPKUA fundraising galas were founded in 2015! 💪  We are thrilled to announce the Nashville event raised more than $655,000! Nashville's 2024 gala wouldn't have been a smashing success without our incredibly generous sponsors, donors, and 330 guests.  A very special thank you and round of applause to the five co-chairs who played a pivotal role in making this event a chart topper. Their dedication and hard work were truly inspiring-Heather Bomar, Whitney Hatcher, Molly McDevitt, Natalie Owen, and Lisa Toporek. 💙🧡  #LiftingtheLimitsforPKU #PKUWarrior #TogetherforaCure
National PKU Alliance
Non-profit Organization Management
Washington, District of Columbia 1,494 followers
The NPKUA’s mission is to improve the lives of individuals with PKU and pursue a cure.
About us
The National PKU Alliance was formed in 2008 by parents, grandparents, and individuals to become a national voice for those with Phenylketonuria (PKU).
- Website
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http://www.npkua.org
External link for National PKU Alliance
- Industry
- Non-profit Organization Management
- Company size
- 2-10 employees
- Headquarters
- Washington, District of Columbia
- Type
- Nonprofit
- Founded
- 2008
- Specialties
- Advocacy, Support, Education, and Research
Locations
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Primary
Get directions
1802 Vernon St NW
PMB2389
Washington, District of Columbia 20009, US
Employees at National PKU Alliance
Updates
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Last month, the leading industry experts, clinicians, academics, and patient advocates in the field of metabolic disorders gathered in Porto, Portugal at the 2024 Symposium for the Study of Inborn Errors of Metabolism (SSIEM) Conference📚🧬. While this conference covered topics related to all inborn errors of metabolism, there were many sessions dedicated specifically to PKU. Throughout the week, there were PKU symposiums sponsored by various industry partners alongside numerous poster presentations and general sessions. These discussions covered a variety of PKU-related topics. For more details on specific presentations and poster topics, click the link below. https://lnkd.in/gsRDUdXk #SSIEM2024 #FindaCure #PKU
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We are excited to announce that Scott Pelley, award-winning journalist and 60 Minutes correspondent, has been honored with the PKU Hero Award for his passion and support of the PKU community! Scott has generously donated his time and energy as the host of 12 Lifting the Limits galas, significantly benefitting our community by raising awareness and funds for those affected by PKU. Thank you, Scott, for your incredible support and commitment to making a difference! ðŸ†ðŸ‘ #LiftingtheLimitsforPKU #HeroAward #RareDisease
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Our Executive Director, Catherine Warren and PKU Registry Coordinator, Kelsey McQueen, MS, CGC attended the National Organization for Rare Disorders Breakthrough Summit this week. They had the opportunity to connect with many other patient advocacy groups, industry partners and regulatory leaders! #nordsummit
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In the D.C. area and looking to add classic pieces to your fall wardrobe? Look no further! PKU community member Pamela Burns is hosting a styling event at Veronica Beard on October 16th, with a percentage of proceeds benefiting the NPKUA. THANK YOU to Pamela and her brother, Kent, for your thoughtful fundraising efforts!
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We are so appreciative of our supporters! Thanks Firstplay Dietary Foods (Promin) for your support of the 2024 NPKUA Conference! 💙
Thank you National PKU Alliance for the wonderful gift. It was a genuine pleasure to participate in the NPKUA event in Virginia, and we enthusiastically anticipate supporting all families with their low protein food choices. With appreciation from the proud Promin team! We have this in our office to look at every day..
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We are excited to introduce NPKUA’s newest team member, Peyton Hicks, as our Communications and Events Coordinator! As the first person on the team with PKU, Peyton brings a unique and personal perspective to her position. Having lived with classical PKU and having family members impacted by the condition, Peyton has a deep-rooted commitment to raising awareness and supporting the PKU community. She has grown up attending NPKUA events, camps, conferences, and fundraisers. Peyton graduated in December of 2023 from Champlain College, earning her bachelor’s degree in Communications with a specialization in Public Relations and a focus in Marketing. She even did her Senior Project on the National PKU Alliance! Please join us in welcoming Peyton to the NPKUA team!
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We are pleased to share that PTC Therapeutics has announced that the U.S. Food and Drug Administration (FDA) has accepted for filing the New Drug Application (NDA) of sepiapterin for the treatment of pediatric and adult patients living with phenylketonuria (PKU). This marks an important milestone to potentially bring a new treatment option for individuals with PKU. You can read the full press release here: https://lnkd.in/gDRNU9Pj.
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A big thank you for supporting Lifting the Limits! We appreciate you!!
Great Night, Great Cause, Great People They say great things come in threes… and Saturday night was no exception! Pinnacle Financial Partners was proud to sponsor a table at the National PKU Alliance Event in Nashville, where the energy in the room was electric. Together, with the incredible support of attendees, we raised over $600,000 to advance critical research for PKU. This funding will make a significant impact in the lives of individuals and families affected by this rare genetic disorder. We are truly grateful for our friends, colleagues, and partners who joined us in supporting this important cause. Their generosity and enthusiasm helped make this night unforgettable. Gather like-minded friends, find a cause that speaks to your heart, and you’ll be amazed at what you can achieve together. Here’s to great nights, great causes, and great people! #MondayMotivation #Grateful #Thankful
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