In 2022, the Social Health Network partnered with several incredible patient leaders to create impactful social media campaigns. As part of this partnership, we want to highlight these amazing individuals’ advocacy work.
Tanya Freirich, Lupus Patient Leader
Tanya combines her passion as a registered dietician nutritionist with advocating for lupus. Navigating her own lupus diagnosis, she found that lifestyle and dietary changes helped her manage the disease. Tanya loves connecting with others in the lupus community and providing education about nutritional support. She enjoys engaging in various ways through writing, speaking, and social media.
Tanya says, “I hope to continue to reach the people that are interested in living better with lupus and help them!” Tanya advocates as The Lupus Dietician.
Website: https://www.thelupusdietitian.com/
Instagram: @thelupusdietician
Facebook: https://www.facebook.com/TheLupusDietitian
TikTok: @thelupusdietician
Devin Garlit, Multiple Sclerosis Patient Leader
Devin was diagnosed with multiple sclerosis (MS) when he was in college. Devin was familiar with MS, as his grandfather also lived with the disease. He had observed the lack of understanding for MS before his own diagnosis. Devin sees his advocacy work as a way to help others by sharing his story.
He recently collaborated with Marvel Comics on the Darkhawk comic books, offering guidance on what life would look like for a superhero with MS. He told us, “I got to speak about my life with MS in the back of one of the issues. That was an incredible opportunity for me and everyone with MS.”
MultipleSclerosis.net writings: https://multiplesclerosis.net/author/dev71
Natalie Hayden, Crohn’s Disease/Inflammatory Bowel Disease Patient Leader
Natalie kept the first 10 years of her Crohn’s diagnosis quiet before stepping into advocacy. She explains, “I decided it was time to open up and start being vocal about my journey so I could make the experience less daunting and isolating for others.”
Navigating 3 pregnancies with Crohn’s, Natalie brings visibility and support to others considering pregnancy and parenting with Crohn’s. She uses her journalism storytelling skills to share her journey with others. She values the many connections she makes with the Crohn’s community through social media. Natalie advocates as Lights Camera Crohn’s.
InflammatoryBowelDisease.net writings: https://inflammatoryboweldisease.net/author/natalieannhayden
Website: https://lightscameracrohns.com/
Instagram: @natalieannhayden
Facebook: https://www.facebook.com/natalieasparacio/
Twitter: @nataliesparacio
Jenn Heater, Migraine Patient Leader
When she left the workforce due to her chronic migraine and trigeminal neuralgia, advocacy was a lifeline for Jenn. She found new opportunities and purpose in helping those with migraine feel less alone. Jenn regularly wears migraine-related shirts or buttons, which serve as conversation starters. She works as a volunteer with the publication “My Chronic Brain” and is involved with RetreatMigraine.
Jenn is not afraid to be honest about her disease and publicly acknowledge the bad days. She says, “I am not shy about posting how I feel when I am hurting – I think it’s an important part of advocacy. It’s okay to not feel okay and show what chronic illness really looks like.” Jenn advocates as Chief Medical Oddity.
Blog: https://medicallyodd.com/
Instagram: @chiefmedicaloddity
Facebook: https://www.facebook.com/MedicalOddity
Twitter: @medical_oddity
Linda Hoetger, Prostate Cancer Patient Leader
Linda’s life shifted when her husband received an aggressive prostate cancer diagnosis. She went from being a wife and mom to a wife, mom, and caregiver. Linda felt shocked by her lack of awareness about prostate cancer. She began her advocacy journey to help raise awareness.
Linda created Petey the Prostate, a mascot made from a walnut – the size of a normal prostate. Petey is a helpful visual for discussing prostate cancer. She and her husband lobbied Ohio lawmakers, and Ohio became the first state to produce ZERO The End of Prostate Cancer license plates! She advises, “Speak from your heart about your journey.” Linda advocates as Petey the Prostate Crusader.
Blog: http://peteytheprostatecrusader.blogspot.com/
Instagram: @peteysmom09
Facebook: https://www.facebook.com/linda.dickeyhoetger
Stephen Huff, Lung Cancer Patient Leader
Stephen was 29 when he was diagnosed with stage IV non-small cell lung cancer. He discovered the neglect in lung cancer education and awareness due to the perception that “smoking causes lung cancer.” Stephen began his advocacy to change that perception. His advocacy efforts led him to found a nonprofit, the Huff Project, which helps to fund various lung cancer initiatives.
In all his work, Stephen focuses on representing and empowering those with lung cancer. For him, “beating cancer isn’t necessarily being cancer-free. It’s not letting cancer steal any precious moments.” Stephen advocates as The Huff Project.
Website: https://www.thehuffproject.org/#/
Instagram: @thehuffproject
Facebook: https://www.facebook.com/TheHuffProject
Twitter: @thehuffproject
Caroline Johnson, Metastatic Breast Cancer Patient Leader
Caroline was diagnosed with stage III breast cancer before her 40th birthday. Already serving as an advocate for her son with special needs, she translated those skills to her own health journey.
After completing cancer treatments, Caroline founded a nonprofit called Twisted Pink. She wanted to address the gaps she saw in research funding for metastatic breast cancer (MBC). Twisted Pink helps to improve access to care for MBC through education and advocacy. Caroline loves her advocacy work, as it gives her “an opportunity to help others and learn from others as well.” Caroline advocates as Twisted Pink.
Website: https://www.twistedpink.org/
Instagram: @twistedpinkorg
Facebook: https://www.facebook.com/twistedpinkcharity
Twitter: @curetwistedpink
TikTok: @twistedpinkorg
Maggie Kudirka, Metastatic Breast Cancer Patient Leader
Maggie was a 23-year-old ballerina with the Joffrey Concert Group in NYC when she was diagnosed with stage IV MBC. She began her advocacy journey to help others learn more about MBC. Maggie combines her love of ballet and advocacy, giving master ballet classes and talking to young dancers about her journey with MBC. She has also participated in dance benefits and spoken on behalf of advocacy organizations.
Maggie affirms the importance of balancing advocacy with self-care. She says, “It can be exhausting to advocate, so it is okay to take a step back and focus on yourself.” Maggie advocates as The Bald Ballerina.
Website: https://www.baldballerina.org/
Instagram: @baldballerina
Facebook: https://www.facebook.com/BaldBallerina
Lisa Moran, Lung Cancer Patient Leader
Lisa’s lung cancer diagnosis as a non-smoker opened her eyes to the misconceptions of the disease. After the initial shock of an inoperable, terminal stage IV lung cancer diagnosis, she channeled her energy into educating. Lisa writes and speaks about her journey with lung cancer. She advocates at the local and national levels for expanded funding and awareness.
If she could talk to herself at the time of diagnosis, she would share this wisdom: “It’s a day-to-day fight. But it will turn into month-to-month and year-to-year. Long-term survival is possible, and it will happen for you.” Lisa advocates as Peace Lungs and Happiness.
LungCancer.net writings: https://lungcancer.net/author/lisamoran
Blog: http://www.peacelungshappiness.org/
Instagram: @plh4lisa, @cookiedemartini
Facebook: https://www.facebook.com/lisa.stanafordmoran
Twitter: @plh4lisa
YouTube: https://youtube.com/channel/UC6B56U8XtYOIzk0vvD6e8Bw
Randy Patrick, Multiple Sclerosis Patient Leader
Talking with others was the most helpful thing for Randy after his MS diagnosis. Social media had a profound effect on Randy’s MS journey. Connecting and receiving support from others helps to prevent loneliness and isolation. He sees his advocacy journey as “bringing the community together and making the patient voices heard.” Randy advocates as Must Stop MS.
Instagram: @must_stop_ms
Facebook: https://www.facebook.com/MustStopMS
Twitter: https://twitter.com/MustStopMS
TikTok: @muststopms
Weekly private group chat, Mondays at 7:00 PM EST:
https://www.facebook.com/groups/813774555344665
or on Twitter using #ChatMS
Susan Rahn, Metastatic Breast Cancer Patient Leader
Susan’s MBC diagnosis came de novo, with metastasis to her ribs and spine. Advocacy gave her a voice. She now writes and blogs across multiple platforms, serves on advocacy boards, and presents at conferences for MBC. She even had the opportunity to be part of an advocacy story/video for Novartis, filmed in NYC.
Susan says, “I want to know I helped make a difference, that I channeled my anger and frustrations regarding this disease in a positive way that will help those diagnosed long after I am gone.” Susan advocates as Stickit2Stage4.
AdvancedBreastCancer.net writings: https://advancedbreastcancer.net/author/susanrahn
Website: https://stickit2stage4.com/
Instagram: @stickit2stage4
Facebook: https://www.facebook.com/stickit2stage4
Twitter: @Stickit2Stage4
Rick Redner, Prostate Cancer Patient Leader
Following his diagnosis and successful treatment of prostate cancer, Rick and his wife, Brenda, struggled in their marriage. He says, “The devastating quality of life issues following treatment for prostate cancer are rarely discussed. Men and couples need support!” This challenging period after cancer treatment became the catalyst for their joint advocacy.
Together, Rick and Brenda co-authored two books about their journey: I Left My Prostate in San Francisco, Where’s Yours? and Everything You Never Wanted to Know about Erectile Dysfunction and Penile Implants: End Your Silence, Sadness, Suffering, and Shame.
Blog: https://whereisyourprostate.blogspot.com
Facebook:
#1. A Facebook page for pre & post surgery:
https://www.facebook.com/pg/whereisyourprostate/about/
#2. A Facebook page for men considering penile implants:
https://www.facebook.com/groups/penileimplants/?ref=share
#3. A Facebook page for folks coping with ED:
https://www.facebook.com/groups/1183346195018101/
#4. A Facebook page for Christians coping with cancer:
https://www.facebook.com/christianscopingwithcancer/
Forums:
Pre-surgery Forum:
https://presurgery.freeforums.net/
Post-surgery Forum:
https://postsurgery.freeforums.net/
Candice “CJ” Walker, Type 2 Diabetes Patient Leader
CJ’s type 2 diabetes diagnosis felt lonely and confusing. She lacked the resources to cope with this new reality. She began her advocacy journey “to empower and encourage others on their chronic and autoimmune illness journeys, so they would not have to go through their journeys alone.”
CJ uses her love of writing to advocate for diabetes. Social media opened a world of possibilities for engaging and sharing her story. CJ advocates as The Genetic Diabetic.
Type2Diabetes.com writings: https://type2diabetes.com/author/thegeneticdiabetic
Blog: https://thegeneticdiabeticblog.com/
Instagram: @thegeneticdiabeticblog
Facebook: https://www.facebook.com/geneticdiabetic
