Rare Disease Legislative Advocates is pleased to invite you to the Eighth Annual RareVoice Awards

Wednesday, December 4, 2019

6:00 p.m. Cocktail Receptionartboard-1 7:30 p.m. Congressional Toastartboard-1 8:00 p.m. Awards Ceremony
artboard-1 9:00 p.m. After Party Celebration

Arena Stage artboard-1 1101 6th Street, SW artboard-1 Washington, DC

Complimentary Valet artboard-1 Business or Formal Attire

This is a free and widely attended event

The RareVoice Awards is an annual celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government. Patient advocates, industry executives, and Congressional and government agency staff gather to honor these outstanding advocates in the rare disease community. 2019 will mark the 8th year of the RareVoice Awards, which is held at the Arena Stage in Washington, DC.

Award recipients are chosen by committee from nominations received from the rare disease community. Awardees receive an “Abbey” statuette commissioned specially for the RareVoice Awards, and named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD).

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2019 RAREVOICE AWARDS MASTER OF CEREMONIES

Mike Porath
Founder and CEO of The Mighty
and #RareDad

Mike Porath is founder and CEO of The Mighty, the leading health community that reaches more than 20 million people a month, and father to a daughter with Dup15q syndrome, a neurogenetic disease associated with autism spectrum disorder, intellectual disability, and epilepsy.

Read more about Mike

Mike is the founder and CEO of The Mighty, the leading health community that reaches more than 20 million people a month. Mike’s entry into the rare disease community came through his daughter, who has Dup15q syndrome, a neurogenetic disease associated with autism spectrum disorder, intellectual disability, and epilepsy. Soon after her diagnosis, Mike joined the board of directors for Dup15q Alliance and now also serves as fundraising chair. The community he became a part of inspired him to create The Mighty to empower and connect people facing rare diseases and other health conditions. He also serves on the board of directors for the National Organization for Rare Disorders (NORD) and as a member of the Global Commission to End the Diagnostic Odyssey for Children With a Rare Disease. Mike spent most of his career as a journalist, where he won multiple awards and held a variety of reporting, editing, producing and executive roles at ABC News, NBC News, The New York Times and AOL. For his work building The Mighty, he was named as one of the top 50 philanthropists by Town & Country in 2017. He has become a leading voice for patient-centered healthcare and speaks at events around the world about leveraging people and technology to improve the lives of patients. Mike lives in the Los Angeles area with his wife Sarah and their four children.

Meet Mike at the RareVoice Awards on December 4th – Register today.

2019 RAREVOICE AWARDS PRESENTER

Tilea West
2019 Cherry Blossom Queen and rare disease patient advocate

Tilea is the 2019 Cherry Blossom Queen and has hyper-immunoglobulin E syndrome. She will present the awards to the 2019 RareVoice Awards honorees on December 4th.

Learn more about Tilea

Tilea is a 2018 graduate from the University of Georgia. She actively enjoys working in clinical trials research at Georgetown University Hospital and is currently in a post-baccalaureate pre-medicine program at Georgetown University. Tilea dreams of being a doctor one day, because of her own experience of living with a chronic rare disease. Tilea was diagnosed with hyper-immunoglobulin E syndrome (HIES), or Job syndrome, during her sophomore year of college. Tilea became the 2019 Cherry Blossom Queen due to the spin of a wheel, which she had a 1.9% chance of winning. Having grown accustomed to overcoming seemingly impossible odds by living with a rare disease, Tilea was not surprised. As Cherry Blossom Queen, Tilea’s platform is to raise awareness for rare disease and her platform is “Think Zebra”. She chose this platform, because in medical training, students are taught to assume the most common disease instead of something rare. Tilea chose to work with the EveryLife Foundation, because she loved that the organization provides a platform for patients to advocate on a personal, state and national level. Photo credit: Carlos Alberto

Meet Tilea at the RareVoice Awards – Register today.

2019 RareVoice Award Patient Advocate Finalists

Thank you to the rare disease community for nominating these outstanding individuals who have gone above and beyond to become rare disease leaders, having advocated for state or federal legislation that benefits the rare disease community.

Federal Advocacy

Isabel Bueso

Isabel Bueso

Learn more about Isabel

Isabel Bueso
Isabel, 24 years-old and a summa cum laude graduate of California State East Bay, was born with MPS VI. Isabel came to the United States to participate in a clinical trial. The trial resulted in FDA approval of Naglazyme, which has saved the lives of patients with MPS VI worldwide. For six years Isabel has advocated on rare disease issues, including newborn screening, NIH funding and orphan drug designation. She has organized numerous rare disease day awareness events and created a scholarship to support students with rare diseases. Most recently, Isabel was a leading voice in standing up for rare disease patients undergoing treatment through clinical trials who are facing deportation. Isabel’s plight caught the attention of the national media, including People Magazine, The New York Times and ABC News. “The reason I advocate for patients with rare diseases is because everyone has a voice and, things will only change by speaking up. I’ll use my own experiences to advocate, encourage change and expose the realities of living with a rare disease to the public.”

Elisa Seeger

Elisa Seeger

Learn more about Elisa

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 Shaw

Learn more about Madison

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.”

Sarah Tompkins

Sarah Tompkins

Learn more about Sarah

Sarah Tompkins
Being an Ehlers-Danlos Syndrome hypermobility type, Sarah knows the challenge of searching years for a correct diagnosis, the frustration of doctors and people close to her not believing her, and the reality of being given a diagnosis for a disease that has no proven treatments or a cure. After losing her best friend, Kellie, to their shared disease (EDS), Sarah dedicated herself to advocating for rare diseases, especially EDS, dysautonomia (POTS), and gastroparesis. To do this, Sarah received multiple stabilizations, surgeries, and procedures to make mobility and traveling possible. Since 2015, Sarah has shared her story in support of rare disease legislation such as 21st Century Cures, OPEN ACT, RARE Act, and Newborn Screening Saves Lives Reauthorization Act. In her home state of Washington, Sarah served as In-District Lobby Days (Rare Across America) Leader and helped to establish a Rare Disease Day. Sarah serves at an administrator of her EDS Support Group, consisting of hundreds of EDS patients, and is working on launching a patient organization called EDS Northwest. Sarah lives in Bellvue, Washington with her husband, Troy, and their Jack Russel, Wilson.

Ashley Valentine

Ashley Valentine

Learn more about Ashley

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.

Brian Wallach

Brian Wallach

Learn more about Brian

Brian Wallach
Brian is an attorney and ALS patient. In the aftermath of his diagnosis in November 2017, he and his wife founded I AM ALS, a patient-led, patient-centric movement to lead the fight for a cure to the disease. Wallach is also an associate at the law firm Skadden, Arps, Slate, Meagher & Flom LLP. From 2014 to 2018, he served as an assistant United States attorney in the Northern District of Illinois. From 2011 to 2013, he was senior vetting counsel in the Obama White House, responsible for overseeing the vetting process for nearly all Senate-confirmed executive branch appointees and all presidential appointments as well as working on congressional oversight investigations. Brian’s leadership has helped increase the ALS DOD funding from 10 million to 20 million dollars (pending Senate approval), form an ALS Caucus in the House of Representatives, and secure the release of the FDA’s guidance for ALS therapy development.

State Advocacy

Erica Barnes

Erica Barnes

Learn more about Erica

Erica Barnes
Erica is a rare disease advocate whose passion flows out of her experience both as a mother who lost a child to a rare disease and as a speech-language pathologist who has provided services to rare patients. When her second child Chloe was diagnosed with a rare disease, Erica experienced the unique barriers to care that the community faces: Delayed diagnosis, lack of medical professionals familiar with her daughter’s condition, and the absence of an effective treatment. Following the death of Chloe, Erica began interacting with families from other rare communities at Rare Disease Day events. She heard the same barriers repeated by these families regardless of the specific diagnosis and decided that the Minnesota rare disease community should take a collective approach. In 2019, after two years of advocating, the Chloe Barnes Rare Disease Advisory Council was passed. Erica now works as Council Administrator at the University of Minnesota.

Frances Broussard Denenburg

Frances Broussard Denenburg

Learn more about Frances

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 Glass

Georgene Glass

Learn more about Georgene

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.

Barby Ingle

Barby Ingle

Learn more about Barby

Barby Ingle
Barby is a bestselling author, reality personality, and lives with multiple rare disorders, including reflex sympathetic dystrophy (RSD), migralepsy, PALB2-Var, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author. Her blog, books, presentations, and media appearances are used as a platform to help her become a patient advocate, and she now travels the country attending healthcare conferences, speaking publicly, sharing her story and educating others. Barby shares her healthcare story because what happened to her should not happen to others. It took three years, 43 providers, and being over/under/mis-treated before receiving a proper diagnosis. It was another four years before she had a successful treatment option for her conditions. She wants other rare patients to have an easier time with diagnosis, treatments, and long-term outcomes. Barby advocated in support of the successful passage of the Arizona Copay Accumulator Bill – HB 2166 passed for better access to care for rare patients. She now serves on the Arizona Health Department’s Injury Prevention Advisory Council.

Kristen Vanags

Kristen Vanags

Learn more about Kristen

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.

Nikia Vaughan

Nikia Vaughan

Learn more about Nikia

Nikia Vaughan
A dedicated community leader in Baltimore, Maryland, Nikia has a passion for healthy living, community and ending stigmas in the African- American community. When her daughter Cimone was diagnosed with sickle cell disease SS in 2012, Nikia created a sickle cell awareness group, Cimone and Friends, to advocate on behalf of, and provide education for, families with children who suffer from sickle cell disease. In 2018, Nikia testified as a parent for SB 161, requiring the State Department of Education and the Maryland Department of Health to establish certain guidelines by December 1, 2018, for public schools regarding the administration of health care services to students with sickle cell disease and requiring the State Department of Education and the Maryland Department of Health by December 1, 2018, to provide technical assistance on implementation of the guidelines and to develop a process to monitor implementation of the guidelines. The bill was passed and signed into law by Governor Larry Hogan in May 2018. Nikia resides in Baltimore City with her husband Charmon and their two children, Langston (10) and Cimone (7).

Teen Advocacy

Aidan Abbott

Aidan Abbott

Learn more about Aidan

Aidan Abbott
Aidan is a 14 -year old rare disease advocate from Slinger, Wisconsin. Aidan enjoys playing basketball and is an avid Milwaukee Bucks fan. He was born with a rare disease, ectodermal dysplasias (XLHED), which affects his hair, skin, sweat glands and he is missing many of his teeth. Aidan became an advocate after struggling to receive health insurance coverage for the complex treatment of his missing teeth, a congenital anomaly. After fighting insurance for many years, Aidan shared his story with Senator Tammy Baldwin (D-WI) and inspired her to write the Ensuring Lasting Smiles Act (ELSA), which Aidan had the privilege of naming. This federal legislation would ensure that medical insurance pay for the medically necessary repair of congenital anomalies, including dental/oral treatments. Aidan has made it his mission to work with legislators on both sides of the aisle to move ELSA forward and get ELSA passed into law.

Emma Detlefsen

Learn more about Emma

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 Thomas

Learn more about Britney

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.

Vienne Weinert Wood

Vienne Weinert Wood

Learn more about Vienne

Vienne Weinert Wood
Vienne is fourteen years old and at age two was diagnosed with Doose Syndrome, a rare epilepsy, with myoclonic-atonic seizures. Because the drug required to treat her, called Epidiolex, is only indicated for seizures associated with Dravet and Lennox-Gastaut Syndromes, she was refused access to the medicine due to state law. Vienne, along with her parents and support dog Magic, testified in support of a bill that would change that. Vienne’s advocacy helped inspire others to stand in support of the bill, which was signed into law by Governor Hickenlooper on June 4, 2018. Vienne’s advocacy also extended to her local school district, resulting in the development of a national model to ensure special education students receive adequate funding for their unique needs and ensuring rare disease patients have access to all available therapies.

2019 RAREVOICE AWARD CONGRESSIONAL STAFF FINALISTS

Samantha Helton Elleson, Senator Wicker (MS)

Learn more about Samantha

Samantha Helton Elleson
Samantha is the senior legislative assistant in the Office of Senator Roger F. Wicker (R-MS). In this capacity, she supports several of the Senator’s legislative priorities, including telecommunications, environment, and economic policy. In May 2017, Samantha took over the domestic and global health care portfolio. She leads Senator Wicker’s efforts as he serves as the Senate Rare Disease Caucus Co-Chair. Senator Wicker has been a champion for Duchenne muscular dystrophy and continues to support increased funding and coordination for biomedical research. A native of Jackson, Mississippi, Samantha earned a bachelor’s degree in Public Policy from the University of Mississippi.

Debbie Jessup, Representative Roybal-Allard (CA-40)

Learn more about Debbie

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, Senator Cantwell (WA)

Learn more about Nico

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.

Wendell Primus, Representative Pelosi (CA-12)

Learn more about Wendell

Wendell Primus
Wendell is the senior policy advisor on budget and health issues to Speaker Nancy Pelosi. In that capacity, he was the lead staffer in developing the Affordable Care Act. He also played a major role in the Sustainable Growth Rate legislation in 2015 and various budget agreements. Prior to this appointment in March of 2005, Wendell was the minority staff director at the Joint Economic Committee. He has also held positions at the Center on Budget and Policy Priorities, served in the Clinton Administration at the Department of Health and Human Services, and also served as chief economist for the House Ways and Means Committee and staff director for the Committee’s Subcommittee on Human Resources. Wendell received his Ph.D. in economics from Iowa State University.

Saundrea Rupert-Shropshire, Representative McGovern (MA-2)

Learn more about Saundrea

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, Representative Bilirakis (FL-12)

Learn more about Shayne

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.

The honoree in each category as well as the recipient of the Lifetime Achievement Award will be announced at the 2019 RareVoice Awards on December 4th in Washington, D.C. The event is free and open to the public. Register today.

The RDLA believes that every voice matters and that patients are the key to changing public policy. Thank you to all rare disease advocates who have made their voices heard and continue to advance policies that benefit the rare disease community.

Congratulations to all rare disease advocates nominated this year, including: Brian Baird, Catherine Bear, Sarah Bramblette, Sean Brock, Marni Cartelli, Rasheera Dopson, Lindsey Eubanks, Chifuan Head, Ellyn Kodroff, Dawn Lee-Carty, Brendan Locke, Adrienne Marks, Laura McLinn, Andrea Nelson, Tara Notrica, Kimberly Pang, Robin Powers, Tonya Price, Darlene Shelton, King Singh, Capricia Smith, Samantha Stallings, Greta Stifel, Aimee Thompson and Susan Wilson.

Thank you to the RareVoice nominations committee who performed the difficult task of selecting finalists in each category. Committee members include:

Jennifer Bernstein, Horizon Government Affairs Executive Vice President
David Eckstein, National Institutes of Health Program Director for Strategic Partnerships and Policy Development
Taylor Hittle, Congressman Markwayne Mullin Legislative Director
Cheryl Jaeger, Williams & Jensen, Principal
Angela Ramirez Holmes, Cal Rare President

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