July 25, 2024

Drgreesh

Health Can Do

Meet the 2023 Patient Leadership Council Members!

5 min read
Meet the 2023 Patient Leadership Council Members!

The Patient Leadership Council (PLC) is made up of Social Health Award winners and Health Union Patient Leaders. The PLC helps Health Union with event planning and brings the patient perspective into many different projects. This vital group also encourages engagement across Health Union communities.

Meet the 2023 PLC members below.

Social Health Award winners

Jill King

Jill King: Rookie of the Year

Jill navigates her life with non-radiographic axial spondyloarthritis through writing and finding community. She openly discusses disability and illness policies on social media to connect with other people. Jill also works to highlight the effects of disability on mental health and founded the first disability advocacy group at Georgia Southern University.

Erica Carrasco

Erica Carrasco (aka Achy Smile): Creative Contributor

Erica is a fierce migraine advocate for her family and others. She has hemiplegic migraine, and her 2 kids have ocular and vestibular migraine. She has been a part of Headache on the Hill, has advocated for physician training, and is a partner of the American Migraine Foundation and the Association of Migraine Disorders.

Elle Cole

Elle Cole: Caregiving Champion

Elle is a mom of twin girls, one of whom lives with sickle cell disease and type 1 diabetes. She is an advocate for both diseases as well as a skilled writer, speaker, and educator. She produces the podcast VitaminSC3 with the Sickle Cell Community Consortium to share patient stories and bring hope.

Aaron Blocker

Aaron Blocker: Revolutionary Researcher

Aaron lives with Crohn’s disease and an ultra-rare genetic bone disease called hypophosphatasia. He is a patient advocate for both, and his goal is to amplify the patient voice. He has created an online community of more than 30,000 people affected by IBD. Aaron is also a scientific researcher and works in healthcare.

Natalie Hayden

Natalie Hayden: Community Cultivator

Natalie is the author of a long-standing blog about her life and experiences with Crohn’s disease. She especially enjoys sharing stories around pregnancy and motherhood that can bring comfort to others. She has many advocacy roles in pharmaceutical research, social health, and the Crohn’s and Colitis Foundation, among other organizations.

Mildred Velez

Mildred Velez, Fibromyalgia Care Society of America (FCSA): Best Team

The FCSA was founded in 2015 by Mildred Velez. Mildred, who lives with fibromyalgia, noticed a gap in existing nonprofit activity and wanted to provide services to everyone in need. The FCSA’s Center of Excellence supports smaller groups of people with fibromyalgia with workshops and support groups around pain, mental health, and symptom management.

Rachel Hill

Rachel Hill (aka The Invisible Hypothyroidism): Social Media Master

Rachel is an award-winning author of several books as well as a speaker, writer, and thyroid patient advocate. She has worked with the National Academy of Hypothyroidism as well as many podcasts and well-known websites. She covers all aspects of thyroid disease, including mental health, fertility, relationships, and more.

Ella Balasa

Ella Balasa: Healthcare Collaborator

Ella has been living with cystic fibrosis since she was a toddler, leading to countless hospitalizations. Despite having 25 percent lung function, she has not slowed down. She is an avid patient advocate, writer, and scientist. She has served on research committees and planned conferences for the CF community.

Melissa Talwar

Melissa Talwar, Support Fibromyalgia: Advocacy Trailblazer

Melissa is a longtime fibromyalgia advocate and group health coach. She has built the nonprofit Support Fibromyalgia Network, which focuses on group coaching, education, research support, and advocacy training. She is a board-certified functional medicine health coach, also holds other certifications, and has an interest in biohacking as a way to wellness.

Kristal Kent

Kristal Kent: Lifetime Achievement

Kristal is an Army veteran navigating life with fibromyalgia. She is an advocate in the chronic pain, fibromyalgia, and veteran communities. Much of her work is in the education, legislation, healthcare rights, and disability spaces. She serves on many boards and panels, including at the Cleveland Clinic and the Fibromyalgia Care Society of America.

Health Union Patient Leaders

Racquel H. Dozier

Racquel H. Dozier

After experiencing a lack of support, trouble finding information, and her own life-threatening experience with lupus, Racquel created Lupus In Color. Lupus In Color caters to the needs of people of all colors of the rainbow who have lupus, both in-person and across the world. Racquel also is an author and has worked in the social work space.

Diana Castaldini

Diana Castaldini

Diana is a freelance writer and editor living with ankylosing spondylitis. She has written for many media outlets and health and wellness brands. Diana is passionate about the worlds of nutrition, wellness, and lifestyle medicine. She is also interested in the effects of stress and the gut on autoimmune diseases.

Jackie English

Jackie English

Jackie has been living with alpha 1 antitrypsin deficiency for over a decade. She was a certified nursing assistant (CNA) for more than 20 years. Jackie started an alpha 1 nonprofit with a friend and has served as an advocate and support group leader for those in the community.

Davina “Dee” Conner

Davina “Dee” Conner

Davina is an advocate, activist, and award-winning podcast host. She works on HIV prevention access campaigns and has many professional roles dedicated to dispelling stigma around living with HIV. Dee hosts the podcast Pozitively Dee Discussion and started the nonprofit Poz Haven Foundation to provide mental health support.

Tatiana Corbitt

Tatiana Corbitt

Tatiana struggled with the symptoms of type 1 narcolepsy through her graduate studies and the start of her professional career. She studied the benefits of service dogs and trained her own from when it was 8 weeks old. She strives to share her life with narcolepsy to help others work through limitations.

Isela Devora

Isela Devora

Isela started having symptoms of hidradenitis suppurativa (HS) when she was a teenager. She aims to spread awareness of HS and to teach others how to use their voice to speak about their experiences, too. In her community, she works as a social worker and advocate for victims of crime.

Charles Anthony Ulloa

Charles Anthony Ulloa

Charles Anthony served as his mother’s primary caregiver while she battled bladder cancer. He lives every day #StrongLikeSusan. Outside of his health advocacy, he is a fierce financial literacy advocate. Charles is also passionate about wellness options like Reiki and crystal healing.

Vickie Wilkerson

Vickie Wilkerson

Vickie lives with both psoriasis and psoriatic arthritis. She likes to say, “Psoriasis is the gift that keeps on giving.” She is a psoriasis advocate, serving as a community ambassador and one-to-one mentor for the National Psoriasis Foundation.

Ellen Reed

Ellen Reed

Ellen is a champion for compassionate end-of-life care, and she established a private practice in grief and loss. Her efforts awarded her the Nursing Distinguished Alumni Award in 2020 from NYU’s Rory Meyers College of Nursing. Ellen was diagnosed with metastatic ovarian cancer in 2018. She then published a book about her career and healing.

Lauren Dykovitz

Lauren Dykovitz

After her mom, Jerie, was diagnosed with Alzheimer’s disease, Lauren took on the role of caregiver. She served in this role for a decade and aims to share her experiences to help support others. She writes for her personal blog as well as several other media outlets. She has also published two books about her journey.

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