Executive Board Members

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Founder & President

Neena Nizar

 

Treasurer

Penni Romero

Penni Romero, MS, PT graduated from the University of Illinois Medical Center with a Bachelor’s degree in Physical Therapy and has 34 years of experience in Pediatric PT.  She has a Master’s degree in Human Development and the Family, Child Development emphasis from University of Nebraska-Lincoln, is NDT Certified in Pediatrics, and is an Advanced Credentialed Clinical Instructor through the APTA Association.  Penni has presented and published on several research topics nationally.  She works as a staff PT at Elkhorn Public Schools in Elkhorn, Nebraska.  She is also the parent of an young adult with several congenital abnormalities and a history of 11 surgeries prior to graduating high school.

 

Secretary

Dr. Maegan Wallace

Dr. Maegan Wallace graduated from Missouri State University with a degree in Sports Medicine/Athletic Training, attended medical school at The University of Nebraska Medical Center and completed her orthopedic surgery residency at Saint Louis University. 

Dr. Wallace completed her pediatric orthopedic fellowship at AI DuPont Hospital for Children in Wilmington, DE, and is  now an Assistant Professor in the Department of Orthopedic Surgery at the University of Nebraska Medical Center and see patients and operate at Children's Hospital & Medical Center in Omaha, NE.

 
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Leadership Team

Marketing Director

Megan Raiser

Megan Raiser graduated from Otterbein College with a Bachelor of Arts in Public Relations, English and Music. She later earned her Master's in Business Administration with an emphasis in International Business. Megan has experience in non-profit, the arts, education and engineering industries, as well as having served in management positions at both the international children’s publisher Highlights for Children, Inc., and LexisNexis, the leading global provider of legal, regulatory and business information and analytics.

Since having her first son 10 years ago, she’s been a stay-at-home mom who has remained active through freelance work and volunteering in the community.

 
 

Manager

Corporate Engagement

Nadia Bodkin, Pharm.D., M.S. 

Nadia, born with several rare genetic conditions herself, is a seasoned rare disease advocate. She served as the chairperson for Rare NJ, a rare disease advocacy coalition and was the Executive Director for the Rare Disease United Foundation. She founded and is the director of EDSers United, a patient advocacy organization focused on Ehlers-Danlos Syndrome and other rare genetic conditions; and she further conveys her dedication to the chronically- ill community, as a board member for Chronic Connect. Nadia earned her PhD in Pharmacy and Masters in Genetics from Rutgers University. In addition to leading the community outreach and engagement efforts and formulating and implementing collaborative programs specific to the particularities of the rare disease community at Living in the Light; Nadia also works closely with the EveryLife Foundation on rare disease community focused projects. Nadia is determined to make a difference in the lives of those affected by rare conditions by passionately advocating for all of her fellow rare disease patients through her continued love for science and collaboration.


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