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“When the world is silent, even one voice becomes powerful.”

-Malala Yousafzai

 
Rare Disease

how to

government advocate

Government Advocating 101

 
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ABOUT us

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Moderator

Frank Rivera

Co-Founder/President- Stronger Than Sarcoidosis 

My website: https://www.strongerthansarcoidosis.org/

Founder/President- Sarcoidosis of Long Island 

Two time Speaker at the Capitol Building for Congressional Briefings 

February 2015- Accommodation from President Barack Obama 

Frank Rivera is a two time published author: 

An autobiography called "Walking in Silent Pain" 

A continuation biography "I Have Sarcoidosis but it Doesn't Have Me", a book about Strength and Resilience. 

December 2017 Frank was named People of the Year in the newspaper organization TBR News Media.  

April 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. 

2020- 2021- Organized 4 Online Forums.

2022- Patient Advisory Committee for Rare Disease Legislative Advocates- 

Speaking in September 2022 at Patient Centricity & Collaboration World Congress 2022 Americas in Washington DC-  Bridging the Gap Between Government, Pharmaceutical and Patients on clinical trials and research from a Patient's perspective.

Worked with a group of Sarcoidosis doctors, researchers and patients to have a medical journal published by NIH:

https://pubmed.ncbi.nlm.nih.gov/34203584/

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Speakers

Katelyn Laws-
Katelyn is RDLA Program Manager. Before coming to the EveryLife Foundation a two years ago, Katelyn earned her Master's in Public Policy from American University. 

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Sarita Edwards- 

CEO & President at the E.WE Foundation, a 501(c)(3) healthcare advocacy organization. She began her efforts of advocacy and public policy after her 5th child was diagnosed in utero with rare disease Edwards Syndrome or Trisomy 18. Sarita is recognized as a world's top patient expert and social health ambassador. She is an award winning advocate and host of the Being Rare Podcast, an online resource hub and community conversations platform popular for its 60 second episodes. Sarita serves on executive boards and advisory councils within her home state and across the country. She is a rare disease legislative advocate, a member of multiple coalitions, and an active participant in DEI workgroups promoting health & racial equity, disability rights, and genetic advancements. Sarita also serves as a Community Congress member providing advice and insight on urgent policy initiatives. Sarita has a Bachelor of Science in Health Science with professional experience in Healthcare Administration & Patient Access. Sarita has certifications in Seizure Recognition & First Aid from the Epilepsy Foundation and Mental Health First Aid from the National Council for Behavioral Health & Mental Wellbeing. Additionally, Sarita has continuing education studies in effective parenting, childhood behavior, and childhood abuse & neglect. Sarita lives in North Alabama with her husband and their five children. 

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Taylor Kane-

Spent most of her life as a rare disease advocate. She currently serves as Community Engagement Manager at AllStripes, a healthcare technology company dedicated to uncovering new treatments for people with rare diseases. In addition, she is the founder and executive director of Remember The Girls, an international non-profit organization that unites, educates and empowers female carriers of X-linked genetic disorders. Taylor’s activism began when she was in grade school, shortly after her father died from the rare X-linked disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease. Not only did Taylor help raise substantial money for ALD research, she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD in New Jersey. At the age of fourteen, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in effectuating positive change through advocacy, social media, and the legislative process. Since college, she has served as a leader of the Young Adult Representatives of the Rare Disease Legislative Advocates (YARR), educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments. Taylor is a summa cum laude graduate of The George Washington University who resides in New Jersey, but spends several months each year in the United Kingdom. She is an award-winning activist, an accomplished speaker, and a respected author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.

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Ella Balasa- 

A patient advocate, consultant, and a person living with cystic fibrosis. She was diagnosed at 18 months old and has experienced countless hospitalizations since being a child. She has committed her time to empowering patients and advancing research and healthcare strategies through her connections with researchers, pharmaceutical companies, and patient organizations. She is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections and speaks publicly at conferences, meetings, and to companies about the value of patient perspective. She also has a passion for writing; distilling clinical information for patient communities, and sharing about the hardships yet triumph that comes with living with a chronic illness. She has been published in journals, news sites, and blogs. Through opportunities working with healthcare organizations and sharing her journey through content strategy, writing, public speaking, clinical trial development, and sharing the patient experience she aims to affect the healthcare landscape by raising awareness of rare diseases, promoting self-advocacy to patients, and valuable insights to organizations. More of her work and experiences can be found at www.ellabalasa.com.

Sarah Tompkins-

Sarah lives in Bridle Trails in Bellevue, Washington with her husband, Troy, and their Jack Russel Terrier, Russell Wilson. Sarah is a Patient Advocate for Rare Diseases, Connective Tissue Diseases including her own patient communities of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (EDS/HSD), Dysautonomia Syndrome, Gastroparesis Syndromes, and more. Sarah advocates for invisible illnesses and disabilities, chronic pain patients, ADA rights, patient advocacy, & self-care. Sarah was honored to be nominated in 2019 for The Rare Voice Awards Nomination for Federal Patient Advocacy, and has advocated for legislation and causes including 21st Century Cures, NIH and FDA Funding, the OPEN Act, STAT Act, Access to Genetic Counseling Services Act, for establishing a Washington State Rare Disease Advisory Council, and more. Sarah advocated for and helped in establishing Rare Disease Day in Washington State through a Proclamation of Rare Disease Day Feb. 28th, 2015. Sarah currently serves on the Rare Disease Legislative Advocates (RDLA) Advisory Committee as an EDS, Hypermobility, & Rare Diseases Patient Advocate and served as Advocacy Chair of Virtual Rare Disease Week 2022. In July 2022, Sarah will compete as Ms. Wheelchair Washington USA 2022 on her platform of "Practice Self-Care For Your Healthcare" for the Ms. Wheelchair USA Pageant in Ohio, please follow her advocacy & pageant journey on social media. 

 

Moderator- 

Frank Rivera- Welcome everyone introduce the Speakers – Give an outline of the event and Why we are doing this?

 

Speakers- 

 

Katelyn Laws- RDLA- Their role with the community and advocacy. How RDLA, EveryLife Foundation, helps the rare disease community

 

Sarah Tompkins- Patient Story and RDLA Patient Advisory Committee President- Federal Advocating. Why it is so important?

 

Sarita Edwards- Patient Story and Parent RDLA Patient Advisory Committee VP- Your story and explain how you got started and tips on how patients and caregivers can get started even from home.

 

Taylor Kane – Patient story- Young adults in the rare disease community being involved with government advocacy. How the young adults can get started.

 

Ella Balasa- Patient story- How to empower patients and caregivers to be advocates?

 

Ask the Speakers- 25-30 minutes- Your time to ask questions

AGENDA