IPAD - Key Persons

Job Titles:

• Founder
• President
• President and Founder of the Intermountain PKU
• President of the National PKU Alliance

Amy J. Oliver is the President and Founder of the Intermountain PKU and Allied Disorders Association. At only eight days old, her beautiful baby girl was diagnosed with Phenylketonuria (PKU). Amy spent countless hours searching for information about PKU and what it meant for their daughter; she longed to meet other families with children with PKU. Unfortunately, there was no support group for families dealing with PKU. To ensure that no other family had to go it alone, she decided to join with other local families and start their own non-profit organization that could provide support and education to PKU families and help search for a cure. In 2008, the Intermountain PKU and Allied Disorders Association was born. Amy is the current President of the National PKU Alliance, the only national non-profit dedicated to the PKU community. She has served on its Board of Directors since 2009 and previously chaired its National Advocacy Committee. Amy has been a passionate advocate for PKU at the local, state and national level and has worked to ensure everyone with PKU has access to medical foods and treatment. Amy also serves as a member of the Utah Newborn Screening Advisory Committee and the Utah Newborn Screening Research Review Panel.

Job Titles:

• Pediatric Nurse Practitioner

Ashley Vollenweider is a Pediatric Nurse Practitioner residing in Salt Lake City Utah. She is currently a Pediatric Nurse Practitioner for the metabolic clinic at the University of Utah's Pediatric Medical Genetics Division. In addition, she is the coordinator for the Undiagnosed Disease Program at the University of Utah/Primary Children's hospital. Ashley works with many of the children and adults with PKU in Utah and the immediate surrounding environments. She is particularly passionate about working with children and their families in the transition to self care/management. When not working, Ashley enjoys spending time with her husband and two fur children. Hiking, biking and reading are favorite pastimes in addition to visiting her nephews and family in Boise, Idaho. In the 3+ years that she has worked in the field, she has seen great advancement in the management of PKU. She hopes to see this continue as new therapies and ways to make living with PKU easier continue to arise. As an adult with PKU, Stacey Harrell-Nelson brings a unique perspective to the IPAD organization. She has been on the board since it began. She has counseled parents of PKU children in many stages of life, as well as teens and young adults with PKU and women with PKU dealing with pregnancy. She has worked with the National PKU Alliance and BioMarin in advancing PKU issues.

Heidi Maxfield joined IPAD after relocating to Utah in 2013. Since her son's PKU diagnosis in 2007, she has been a tireless advocate for awareness about the disease and ensuring that life with PKU has no boundaries. As a parent ambassador, she has worked with both the metabolic clinics and medical schools at the University of Louisville and the Medical College of Virginia in educating medical students and advocating for PKU awareness. She has also worked with the National PKU Alliance in assisting with national conferences and lobbying efforts in Washington, D.C. Heidi has a degree in journalism and public relations from Utah State University. She is a stay-at-home mom who does freelance work in her spare time. She has led both humanitarian and leadership organizations, and formerly authored a food blog. Heidi is an avid reader, and enjoys food, gardening, sports, being outdoors and travel. Most of all, she loves spending time with her husband and their four children, the oldest of whom has PKU. She is in awe of the scientific advances that have been made in PKU research, and hopes for continued strides in PKU treatment and care.

As an adult with PKU, Stacey Harrell-Nelson brings a unique perspective to the IPAD organization. She has been on the board since it began. She has counseled parents of PKU children in many stages of life, as well as teens and young adults with PKU and women with PKU dealing with pregnancy. She has worked with the National PKU Alliance and BioMarin in advancing PKU issues. Stacey has a Bachelor of Arts degree. She has lived for a short time in Europe as well as having traveled to Australia, Canada, Mexico and across the U.S. She currently lives in Salt Lake City. She has a successful marriage and a healthy energetic son. Stacey desires to help those facing the challenge of PKU have hope in moving forward. PKU is a challenge not a barrier.

Jon Baker has been involved with IPAD since its creation. He helps raise awareness for PKU and has been involved in planning IPAD functions and fundraising events. He values these events for the benefit it brings to people with metabolic diseases and appreciates the fundraising efforts that raise funds for PKU research. Jon especially enjoys the PKU campout at Camp K in Salt Lake each year and also enjoys working with the adults with PKU. Jon holds a Bachelor's Degree in Business Management and a Master's Degree in Business Administration. He and his wife have 2 sons, 14 and 10, and 1 daughter, 12. His daughter has PKU. They reside in Bountiful, Utah. He is employed with a local bank in Salt Lake City. Jon enjoys triathlon, cycling, trail running, vacationing, and spending time with his family.

Sara Tye was born and raised near Salt Lake City, Utah. She earned a Bachelor of Science degree in nutrition and food science with a minor in political science from Utah State University. She worked for the University of Utah until her first child was born in 2007, after which she left the workforce to be a stay at home mom. She then went on to have two more children. All three of her children were diagnosed with PKU at birth. The Tye family now resides in Logan, Utah, and a typical day often includes cooking low protein foods and shuttling kids to school and activities. Sara also loves to spend time doing anything outdoors. She loves to ski and snowshoe, water ski, hike and camp. She also loves to read and play the piano. Her greatest hope is that there will someday be a cure for PKU, but in the meantime she hopes all people with PKU can maximize their potential through excellent care and access to life-saving medications and formula.