Find Your Fight Song: Self-Advocacy Workshop

Everyone has a story to tell. This interactive workshop will give you the tools and skills on how to effectively share your personal narrative of how a bleeding disorders impacts your life.

Date

Apr 21 2022
Expired!

Time

Central time
2:45 pm - 3:45 pm

Location

Room 16

Speakers

  • Adrian Palau Tejeda
    Adrian Palau Tejeda

    Adrian Palau-Tejeda is the Senior Manager for Health Disparities and Engagement Hemophilia Federation of America (HFA). He holds a Bachelor of Arts in Political Science with a minor in international affairs (BA) degree from the University of Wisconsin-Milwaukee. Adrian is successful health care policy leader, driven by community engagement, data and congressional relationships. Coming from a background in equity and campaign work, Adrian previously held the diversity and inclusion fellowship at the EveryLife foundation for Rare Diseases before coming to HFA. Adrian has labored in the rare disease space to promote the equitable access to treatments and cures for underserved communities, being selected as the winner of the 2021 Sanofi Genzyme Torch Award in Diversity and Inclusion for his work. Since joining the team at the Hemophilia Federation of America, has helped relaunch the Health Disparities Council. Adrian is excited to work to drive forward the cause of health equity in the bleeding disorder space.

  • Lindsay Cox
    Lindsay Cox

    Lindsay Cox is the Senior Manager for Advocacy & Outreach for the Hemophilia Federation of America (HFA). In her role at HFA, Lindsay leads and manages the Young Adult Advocacy Summit (YAAS), the Policy & Government Relations internship, and the annual Fly-In/Week of Advocacy and Congressional Reception. She leads the Public Affairs team’s advocacy education efforts, assists the HFA policy team with federal policy and regulatory efforts, supports HFA member organizations on state advocacy and policy initiatives. Prior to joining HFA in 2021, Lindsay served as the Director of Engagement and Strategic Innovation for the New York City Hemophilia Chapter and the Coalition Manager for the New York State Bleeding Disorders Coalition. As an experienced advocate based in Albany, New York, Lindsay was integrally involved in the passage of numerous pieces of legislation in New York State, including those regarding anti-mandatory mail order, non-medical switching, the creation of a Rare Disease Advisory Council, March is Bleeding Disorders Awareness Month, and more. Lindsay has been a featured speaker and facilitator on topics such as coalition building, creative methods for advocacy training, storytelling techniques, and ways to connect community members and legislators. She holds Bachelors of Arts in Political Science and Philosophy, Politics, and Law from Binghamton University, graduating in 2017 with President’s Honors.

  • Sonji Wilkes
    Sonji Wilkes

    Sonji Wilkes CAE, graduated Magna Cum Laude with a Bachelor of Arts in Behavioral Science and certificate in Public Administration from the Metropolitan State University of Denver in 2001. She holds an executive certificate in NonProfit Management from Georgetown University and earned the Certified Associations Executive (CAE) designation from ASAE in 2021. After a decade of advocacy work that led to her family’s insurance struggles being published by multiple national and international media, as well as being recognized by the White House, Sonji joined the Hemophilia Federation of America in 2013 and has served as a Program Manager for the HFA Families Program, coordinating educational and advocacy outreach for parents of children with bleeding disorders. She halso previously served as HFA’s Communications Manager, overseeing HFA’s digital communications, and since 2016 has been engaging and empowering community advocates within HFA’s policy and advocacy team. She currently leads policy and advocacy efforts as HFA’s Vice President of Policy and Advocacy. Sonji is intimately familiar with the challenge of caring for a child with a chronic disorder as her son has hemophilia with inhibitors, and in 2019 testified before a Congressional committee about some of those challenges. She knows the difficulty of managing a disorder medically while also navigating the health care system and is dedicated to helping other families better understand how to advocate for themselves and their families.

QR Code
Scroll to Top