Elisa Seeger
After losing her son, Aidan, to adrenoleukodystrophy (ALD) in April 2012, Elisa started a foundation in his honor, focusing primarily on newborn screening. Armed with the knowledge that newborn screening could have saved her son’s life, Elisa has made it her mission to give other families grappling with ALD better outcomes. Thanks to Elisa’s efforts, her home state of New York was the first to implement newborn screening for ALD in 2013. In the years following, Elisa traveled the country advocating in support of newborn screening. Her work was instrumental in ALD’s addition to the recommended uniform screening panel (RUSP). ALD is now screened in 14 states. Elisa worked with her Congressional representatives to introduce federal legislation that would require states to screen for all diseases on the RUSP and to dramatically shorten the implementation period for newly added diseases.

Madison Shaw
Madison (Maddie) Shaw of Southbury, CT, is a junior at Emerson College and the founder of Maddie’s Herd – a grassroots patient advocacy organization. Maddie established the ‘herd’ while in 8th grade after navigating her own diagnostic odyssey with primary immunodeficiency (PI). As a volunteer advocate leader for the Immune Deficiency Foundation, Maddie played an important advocacy role in passage of the extension of the Medicare IVIG Access Act of 2012, which established a three-year demonstration project providing coverage for home infusions of intravenous Immunoglobulin (IVIG). Maddie’s effective leadership caught the attention of several Members of Congress, including Congresswoman Rosa DeLaura, for whom she served as an intern. Maddie has raised more than $66,000 in support of research and patient resources, has served as a spokesperson for Make-a-Wish Connecticut and is currently a political communications major with double minors in environmental studies and post-colonialism. Maddie encourages other young adults with chronic illness by telling them, “These years are just your prologue.”

Ashley Valentine
Ashley is Co-Founder and President of Sick Cells, a nonprofit organization. Her older brother and Co-Founder of Sick Cells, Marqus, has sickle cell anemia, Hgb ss. Ashley completed her Master’s in Research Methods from the University of Aberdeen, Scotland. She focused on disparities in healthcare for people with SCD in London. After graduate school, she worked with University of Illinois in Chicago’s sickle cell program and later transitioned into policy work in Washington, DC. While working as a policy researcher, Ashley successfully wrote sickle cell disease into part of an $8 million Centers for Medicaid and Medicare Services funding opportunity to address disparities for adults in the emergency department. Ashley’s work with Sick Cells has activated the SCD community to pass federal legislation in 2018 and become stakeholders in the rare disease space. In 2019, Ashley and her brother, Marqus, were named the Chicago Red Cross Heroes and inducted into the Fresenius Kobi Blood Donation Hall of Fame for their work in federal legislation and brining awareness to sickle cell disease and the needs of the community.

Frances Broussard Denenburg
Frances “Frani” Broussard Denenburg is the founder and president of Arrivederci ALD, a charitable organization dedicated to raising awareness and funds for research to find more treatments and a cure for adrenoleukodystrophy and adrenomyeloneuropathy. The organization was founded after Frani, her mother, her two adult brothers, her young daughter, and toddler son were diagnosed with ALD in 2018. Frani started advocating within months of the diagnosis. She testified before the Texas House of Representatives Committee on Appropriations in support of newborn screening for ALD. Texas passed and funded the legislation, and Frani worked closely with staff at the Texas Department of State Health Services in advance of implementation. Frani is also dedicated to bringing awareness to the unique medical and personal challenges that women with X-linked disorders face through her work with Remember the Girls. Frani is an education lawyer and has represented public and private school districts for over 12 years.

Georgene “Gina” Glass
Georgene is mother of a 4-year old daughter with sickle cell disease (SCD). After relocating from California to Nevada (NV), Georgene discovered the lack of awareness and resources for children and families affected by SCD in the state. She went on to found Dreamsickle Kids Foundation, the first SCD organization in NV. The mission of Dreamsickle Kids is to #MakeSickleCellPopular and to celebrate, educate and support families impacted by sickle cell disease, while educating medical providers and the community on the impact of this debilitating disease. In just a year, NV passed their first SCD bill with Georgene testifying and rallying other parents, advocates, and medical professionals to do the same. Dreamsickle Kids has been recognized locally and nationally for their advocacy efforts that have changed the way NV supports SCD in a short time. Her daughter, also known as “Warrior Princess Gia”, was the motivation behind Dreamsickle Kids, and now this organization is impacting the lives of children and families with SCD throughout Nevada.

Kristen Vanags
After her son was born with Phenylketonuria (PKU), Kristen co-founded Georgia PKU Connect and became a leading advocate for medical foods coverage. She is a trusted expert on medical nutrition legislation and has lead advocacy initiatives at the state and federal level for more than 10 years. Kristen also serves on the Georgia Newborn Screening Advisory Committee and National PKU Alliance Board of Directors. She previously served on the board of the Southeast Regional Genetics Group and was the chair of the Southeast Newborn Screening & Genetics Collaborative Consumer Alliance. Kristen received the inaugural Applied Nutrition ROSE Award and coordinated the first National PKU Awareness Day with U.S. Senator Johnny Isakson (GA). Prior to her engagement in non-profit work, Kristen was a business process consultant with Accenture and later did freelance change management consulting. Kristen lives with her husband and two children in Atlanta, home of her alma mater, Georgia Tech.

Emma Detlefsen
Emma is 11 years old and was born with primary lymphedema (LE) in her legs and feet. She was properly diagnosed when she was 18 months old. Emma’s parents were shocked to discover the extreme lack of knowledge, treatment options, funding, insurance coverage, and overall general understanding of my disease. Instead of letting LE get the best of her, she decided to do her part to make it better for the millions who suffer from the disease. In 2015, she became a youth ambassador of Lymphatic Education & Research Network (LE&RN) and attended her first lobby day in D.C. in support of The Lymphedema Treatment Act, after making it her New Year’s Resolution to pass the bill. Since then, she has dedicated her life to trying to fix everything that’s wrong with LE. She’s attended over 40 congressional meetings to date in support of the LTA and the LE&RN. Emma has been told that she is 1 of 100,000 who suffer from primary lymphedema. She is determined to be the one to help make this lymphedema less of a struggle for all who suffer.

Britney Thomas
Britney was diagnosed with juvenile idiopathic arthritis when she was 12, three years after the onset of symptoms. It took four years for Britney to see a rheumatologist, due to the shortage of them in the state of Arkansas. Due to Britney’s arthritis going untreated for this period of time, she developed uveitis, which left her blind for weeks. Now 18, she has also been diagnosed with lupus, chronic recurrent multifocal osteomyelitis, uveitis, hyper mobility, Duane syndrome, and other diseases. Today, Britney makes it her passion to advocate for herself and others suffering from rare diseases.

Debbie “Deb” Jessup
Deb has over 40 years of experience in health care and policy. Her early professional experiences included positions as a genetics counselor, registered nurse, lamaze instructor and certified nurse midwife. Since 2005, Deb has been employed as health policy advisor with Congresswoman Lucille Roybal-Allard, where she has been actively engaged in both health appropriations work and helping the Congresswoman to promote her health legislative agenda. In this role Deb has helped form and staff the Congressional Caucus on Maternity Care and the Congressional Public Health Caucus. She has worked to develop and promote several pieces of health legislation, including the Newborn Screening Saves Lives Act (passed in 2007) and its 2 reauthorizations (passed in 2014 and passed by the House in 2019). Debbie is a Fellow of the American College of Nurse Midwives and completed a PhD in Nursing at George Mason University in 2012.

Nico Janssen
Nico serves as a legislative assistant to U.S. Senator Maria Cantwell (D-WA), focusing on health care policy. A native of Port Townsend, Washington, Nico holds a Master of Public Administration (MPA) in health policy from American University’s School of Public Affairs. Nico is also a performing rock musician and songwriter.

Saundrea “Drea” Rupert-Shropshire
Drea is a senior legislative assistant in the office of Congressman James P. McGovern of Massachusetts’s 2nd district. Drea assists the Congressman in his advocacy and leadership on two rare disease, bi-partisan caucuses—the Mitochondrial Disease Caucus, and the Cystic Fibrosis Caucus. She also facilitates the Congressman’s notable work on hunger, nutrition, and food insecurity issues by coordinating with various stakeholders through the House Hunger Caucus. Drea’s other legislative portfolio issue areas include education, judiciary, veterans, and campaign finance reform. From 2016 to mid-2018, Drea worked under then-Senator, Claire McCaskill of Missouri, where she focused on issues involving whistleblower disclosures and government oversight. Drea holds a bachelor’s degree from Howard University and is a member of phi beta kappa honors society. Drea is also an avid runner and rock climber.

Shayne Woods
Shayne currently serves as a senior policy advisor for the Hon. Gus M. Bilirakis of Florida. In this capacity, he plans and develops legislative initiatives while tracking legislation through the legislative process related to healthcare, taxes, agriculture, and energy. Additionally, Shayne prepares public statements, drafts correspondence, and meets with constituents and advocacy groups in regard to the aforementioned issues. Prior to Capitol Hill, Shayne was the founder and chief executive officer of FwdHealth [pronounced “forward health”] – a healthcare IT company that connected clients and their health apps to a network of nationally-certified fitness trainers through live, two-way video chat. In addition to FwdHealth, Shayne also founded and ran a healthcare consulting practice that advised key industry stakeholders on the Affordable Care Act while providing business development assistance. Shayne holds a B.A. from Washington University in St. Louis.