National PKU Alliance Names Lisa Milberg as Executive Director

Milberg will lead a strategic plan for the NPKUA

Jerry Elkins joins National PKU News Board, Jeb Haber joins the NPKUA Board

EAU CLAIRE, Wis., April 25, 2022 /PRNewswire/ — The National PKU Alliance (NPKUA) today announced the hiring of Lisa Milberg as Executive Director, succeeding long-time Executive Director, Christine Brown, who has served in the role since the organization’s founding 13 years ago. Brown has accepted a position in rare disease patient advocacy at a major US pharmaceutical company. The hiring of Milberg marks a new chapter for the NPKUA, with a goal of systematically increasing collaboration and integration of various US organizations within the PKU community. The focus of the initiative will be to put the NPKUA on the path to improve therapies for treating PKU, to achieve better community outreach, and to attract more robust fundraising for the organization.

Milberg previously worked for KPMG in New York City for over 20 years, leading a department of 32 relationship-management professionals across the US with a focus on project management, relationship building, and value-added interactions. Her extensive managerial background also includes consulting, HR management, and professional recruitment. She has been active in the nonprofit world as well, volunteering in breast cancer awareness and founding an arts-related nonprofit organization, serving children in challenging environments.

“I am excited to bring Lisa onboard to lead the organization in what I view as the next strategic phase for the NPKUA,” said Dick Michaux, Founder of the NPKUA. “Christine’s passion and dedication has brought the NPKUA from a startup to the forefront of achievements in research, advocacy, education, and patient engagement, for which we are very appreciative. In this next chapter we aim to do even more. By working together with other important PKU organizations across the country, such as National PKU News, we can unleash a new energy and achieve the success that our loved ones with PKU deserve. Lisa brings extensive leadership experience in larger, more sophisticated enterprises to the NPKUA as it works to support people with PKU to live healthier lives, and to ultimately find a cure.”

The NPKUA and National PKU News also announced that Jerry Elkins, President of the NPKUA, has joined the Board of National PKU News, and that Jeb Haber, President of National PKU News, has joined the Board of the NPKUA.  The two nonprofits are the largest organizations in the US providing services and programs for the PKU community.  According to Elkins, “The reciprocal Board seats represent enhanced cooperation between the two organizations. There are several opportunities emerging in patient-driven, rare disorder communities: venture philanthropy, marrying patient registries with real-time patient data from wearable devices, and multidimensional strategies for path-to-cure planning.  We intend to pursue them all in a collaborative manner.”

The NPKUA was founded in 2008, with a mission to improve the lives of individuals with PKU and to pursue a cure. PKU, or phenylketonuria, is a rare disease affecting approximately 20,000 people in the US. It is an inborn error of metabolism that requires a difficult, carefully controlled phenylalanine (Phe)-restricted diet beginning shortly after birth to prevent severe intellectual disability. 

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SOURCE National PKU Alliance

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