In 2022, the Social Well being Community partnered with a number of unbelievable affected person leaders to create impactful social media campaigns. As a part of this partnership, we need to spotlight these wonderful people’ advocacy work.
Tanya Freirich, Lupus Affected person Chief
Tanya combines her ardour as a registered dietician nutritionist with advocating for lupus. Navigating her personal lupus analysis, she discovered that way of life and dietary adjustments helped her handle the illness. Tanya loves connecting with others within the lupus group and offering training about dietary help. She enjoys participating in numerous methods by writing, talking, and social media.
Tanya says, “I hope to proceed to succeed in the individuals which are serious about residing higher with lupus and assist them!” Tanya advocates as The Lupus Dietician.
Web site: https://www.thelupusdietitian.com/
Instagram: @thelupusdietician
Fb: https://www.fb.com/TheLupusDietitian
TikTok: @thelupusdietician
Devin Garlit, A number of Sclerosis Affected person Chief
Devin was identified with a number of sclerosis (MS) when he was in faculty. Devin was conversant in MS, as his grandfather additionally lived with the illness. He had noticed the lack of knowledge for MS earlier than his personal analysis. Devin sees his advocacy work as a means to assist others by sharing his story.
He just lately collaborated with Marvel Comics on the Darkhawk comedian books, providing steerage on what life would appear to be for a superhero with MS. He advised us, “I received to talk about my life with MS behind one of many points. That was an unbelievable alternative for me and everybody with MS.”
MultipleSclerosis.web writings: https://multiplesclerosis.web/writer/dev71
Natalie Hayden, Crohn’s Illness/Inflammatory Bowel Illness Affected person Chief
Natalie saved the primary 10 years of her Crohn’s analysis quiet earlier than moving into advocacy. She explains, “I made a decision it was time to open up and begin being vocal about my journey so I may make the expertise much less daunting and isolating for others.”
Navigating 3 pregnancies with Crohn’s, Natalie brings visibility and help to others contemplating being pregnant and parenting with Crohn’s. She makes use of her journalism storytelling expertise to share her journey with others. She values the various connections she makes with the Crohn’s group by social media. Natalie advocates as Lights Digital camera Crohn’s.
InflammatoryBowelDisease.web writings: https://inflammatoryboweldisease.web/writer/natalieannhayden
Web site: https://lightscameracrohns.com/
Instagram: @natalieannhayden
Fb: https://www.fb.com/natalieasparacio/
Twitter: @nataliesparacio
Jenn Heater, Migraine Affected person Chief
When she left the workforce resulting from her continual migraine and trigeminal neuralgia, advocacy was a lifeline for Jenn. She discovered new alternatives and goal in serving to these with migraine really feel much less alone. Jenn frequently wears migraine-related shirts or buttons, which function dialog starters. She works as a volunteer with the publication “My Power Mind” and is concerned with RetreatMigraine.
Jenn shouldn’t be afraid to be trustworthy about her illness and publicly acknowledge the unhealthy days. She says, “I’m not shy about posting how I really feel when I’m hurting – I believe it’s an necessary a part of advocacy. It’s okay to not really feel okay and present what continual sickness actually seems to be like.” Jenn advocates as Chief Medical Oddity.
Weblog: https://medicallyodd.com/
Instagram: @chiefmedicaloddity
Fb: https://www.fb.com/MedicalOddity
Twitter: @medical_oddity
Linda Hoetger, Prostate Most cancers Affected person Chief
Linda’s life shifted when her husband acquired an aggressive prostate most cancers analysis. She went from being a spouse and mother to a spouse, mother, and caregiver. Linda felt shocked by her lack of expertise about prostate most cancers. She started her advocacy journey to assist elevate consciousness.
Linda created Petey the Prostate, a mascot comprised of a walnut – the scale of a traditional prostate. Petey is a useful visible for discussing prostate most cancers. She and her husband lobbied Ohio lawmakers, and Ohio turned the primary state to provide ZERO The Finish of Prostate Most cancers license plates! She advises, “Converse out of your coronary heart about your journey.” Linda advocates as Petey the Prostate Crusader.
Weblog: http://peteytheprostatecrusader.blogspot.com/
Instagram: @peteysmom09
Fb: https://www.fb.com/linda.dickeyhoetger
Stephen Huff, Lung Most cancers Affected person Chief
Stephen was 29 when he was identified with stage IV non-small cell lung most cancers. He found the neglect in lung most cancers training and consciousness because of the notion that “smoking causes lung most cancers.” Stephen started his advocacy to alter that notion. His advocacy efforts led him to discovered a nonprofit, the Huff Undertaking, which helps to fund numerous lung most cancers initiatives.
In all his work, Stephen focuses on representing and empowering these with lung most cancers. For him, “beating most cancers isn’t essentially being cancer-free. It’s not letting most cancers steal any treasured moments.” Stephen advocates as The Huff Undertaking.
Web site: https://www.thehuffproject.org/#/
Instagram: @thehuffproject
Fb: https://www.fb.com/TheHuffProject
Twitter: @thehuffproject
Caroline Johnson, Metastatic Breast Most cancers Affected person Chief
Caroline was identified with stage III breast most cancers earlier than her fortieth birthday. Already serving as an advocate for her son with particular wants, she translated these expertise to her personal well being journey.
After finishing most cancers remedies, Caroline based a nonprofit referred to as Twisted Pink. She needed to deal with the gaps she noticed in analysis funding for metastatic breast most cancers (MBC). Twisted Pink helps to enhance entry to look after MBC by training and advocacy. Caroline loves her advocacy work, because it provides her “a chance to assist others and study from others as nicely.” Caroline advocates as Twisted Pink.
Web site: https://www.twistedpink.org/
Instagram: @twistedpinkorg
Fb: https://www.fb.com/twistedpinkcharity
Twitter: @curetwistedpink
TikTok: @twistedpinkorg
Maggie Kudirka, Metastatic Breast Most cancers Affected person Chief
Maggie was a 23-year-old ballerina with the Joffrey Live performance Group in NYC when she was identified with stage IV MBC. She started her advocacy journey to assist others study extra about MBC. Maggie combines her love of ballet and advocacy, giving grasp ballet lessons and speaking to younger dancers about her journey with MBC. She has additionally participated in dance advantages and spoken on behalf of advocacy organizations.
Maggie affirms the significance of balancing advocacy with self-care. She says, “It may be exhausting to advocate, so it’s okay to take a step again and concentrate on your self.” Maggie advocates as The Bald Ballerina.
Web site: https://www.baldballerina.org/
Instagram: @baldballerina
Fb: https://www.fb.com/BaldBallerina
Lisa Moran, Lung Most cancers Affected person Chief
Lisa’s lung most cancers analysis as a non-smoker opened her eyes to the misconceptions of the illness. After the preliminary shock of an inoperable, terminal stage IV lung most cancers analysis, she channeled her power into educating. Lisa writes and speaks about her journey with lung most cancers. She advocates on the native and nationwide ranges for expanded funding and consciousness.
If she may discuss to herself on the time of analysis, she would share this knowledge: “It’s a day-to-day combat. However it’ll flip into month-to-month and year-to-year. Lengthy-term survival is feasible, and it’ll occur for you.” Lisa advocates as Peace Lungs and Happiness.
LungCancer.web writings: https://lungcancer.web/writer/lisamoran
Weblog: http://www.peacelungshappiness.org/
Instagram: @plh4lisa, @cookiedemartini
Fb: https://www.fb.com/lisa.stanafordmoran
Twitter: @plh4lisa
YouTube: https://youtube.com/channel/UC6B56U8XtYOIzk0vvD6e8Bw
Randy Patrick, A number of Sclerosis Affected person Chief
Speaking with others was probably the most useful factor for Randy after his MS analysis. Social media had a profound impact on Randy’s MS journey. Connecting and receiving help from others helps to forestall loneliness and isolation. He sees his advocacy journey as “bringing the group collectively and making the affected person voices heard.” Randy advocates as Should Cease MS.
Instagram: @must_stop_ms
Fb: https://www.fb.com/MustStopMS
Twitter: https://twitter.com/MustStopMS
TikTok: @muststopms
Weekly non-public group chat, Mondays at 7:00 PM EST:
https://www.fb.com/teams/813774555344665
or on Twitter utilizing #ChatMS
Susan Rahn, Metastatic Breast Most cancers Affected person Chief
Susan’s MBC analysis got here de novo, with metastasis to her ribs and backbone. Advocacy gave her a voice. She now writes and blogs throughout a number of platforms, serves on advocacy boards, and presents at conferences for MBC. She even had the chance to be a part of an advocacy story/video for Novartis, filmed in NYC.
Susan says, “I need to know I helped make a distinction, that I channeled my anger and frustrations concerning this illness in a optimistic means that may assist these identified lengthy after I’m gone.” Susan advocates as Stickit2Stage4.
AdvancedBreastCancer.web writings: https://advancedbreastcancer.web/writer/susanrahn
Web site: https://stickit2stage4.com/
Instagram: @stickit2stage4
Fb: https://www.fb.com/stickit2stage4
Twitter: @Stickit2Stage4
Rick Redner, Prostate Most cancers Affected person Chief
Following his analysis and profitable therapy of prostate most cancers, Rick and his spouse, Brenda, struggled of their marriage. He says, “The devastating high quality of life points following therapy for prostate most cancers are hardly ever mentioned. Males and {couples} want help!” This difficult interval after most cancers therapy turned the catalyst for his or her joint advocacy.
Collectively, Rick and Brenda co-authored two books about their journey: I Left My Prostate in San Francisco, The place’s Yours? and All the things You By no means Wished to Find out about Erectile Dysfunction and Penile Implants: Finish Your Silence, Unhappiness, Struggling, and Disgrace.
Weblog: https://whereisyourprostate.blogspot.com
Fb:
#1. A Fb web page for pre & publish surgical procedure:
https://www.fb.com/pg/whereisyourprostate/about/
#2. A Fb web page for males contemplating penile implants:
https://www.fb.com/teams/penileimplants/?ref=share
#3. A Fb web page for folk dealing with ED:
https://www.fb.com/teams/1183346195018101/
#4. A Fb web page for Christians dealing with most cancers:
https://www.fb.com/christianscopingwithcancer/
Boards:
Pre-surgery Discussion board:
https://presurgery.freeforums.web/
Submit-surgery Discussion board:
https://postsurgery.freeforums.web/
Candice “CJ” Walker, Kind 2 Diabetes Affected person Chief
CJ’s kind 2 diabetes analysis felt lonely and complicated. She lacked the assets to deal with this new actuality. She started her advocacy journey “to empower and encourage others on their continual and autoimmune sickness journeys, so they might not need to undergo their journeys alone.”
CJ makes use of her love of writing to advocate for diabetes. Social media opened a world of potentialities for participating and sharing her story. CJ advocates as The Genetic Diabetic.
Type2Diabetes.com writings: https://type2diabetes.com/writer/thegeneticdiabetic
Weblog: https://thegeneticdiabeticblog.com/
Instagram: @thegeneticdiabeticblog
Fb: https://www.fb.com/geneticdiabetic
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