Table of Contents
In 2022, the Social Well being Community partnered with a number of fantastic affected person leaders to create impactful social media campaigns. As a part of this partnership, we wish to spotlight those superb folks’ advocacy paintings.
Tanya Freirich, Lupus Affected person Chief
Tanya combines her hobby as a registered dietician nutritionist with advocating for lupus. Navigating her personal lupus prognosis, she discovered that way of life and nutritional adjustments helped her set up the illness. Tanya loves connecting with others within the lupus group and offering training about dietary give a boost to. She enjoys attractive in more than a few techniques via writing, talking, and social media.
Tanya says, “I’m hoping to proceed to succeed in the folks which are thinking about residing higher with lupus and assist them!” Tanya advocates as The Lupus Dietitian.
Web page: https://www.thelupusdietitian.com/
Instagram: @thelupusdietitian
Fb: https://www.fb.com/TheLupusDietitian
TikTok: @thelupusdietitian
Devin Garlit, A couple of Sclerosis Affected person Chief
Devin was once identified with a couple of sclerosis (MS) when he was once in faculty. Devin was once aware of MS, as his grandfather additionally lived with the illness. He had noticed the lack of awareness for MS earlier than his personal prognosis. Devin sees his advocacy paintings so as to assist others via sharing his tale.
He just lately collaborated with Surprise Comics at the Darkhawk comedian books, providing steering on what existence would appear to be for a superhero with MS. He advised us, “I were given to talk about my existence with MS behind one of the vital problems. That was once an improbable alternative for me and everybody with MS.”
MultipleSclerosis.internet writings: https://multiplesclerosis.internet/creator/dev71
Natalie Hayden, Crohn’s Illness/Inflammatory Bowel Illness Affected person Chief
Natalie stored the primary 10 years of her Crohn’s prognosis quiet earlier than moving into advocacy. She explains, “I determined it was once time to open up and get started being vocal about my adventure so I may make the enjoy much less daunting and setting apart for others.”
Navigating 3 pregnancies with Crohn’s, Natalie brings visibility and give a boost to to others taking into consideration being pregnant and parenting with Crohn’s. She makes use of her journalism storytelling abilities to proportion her adventure with others. She values the numerous connections she makes with the Crohn’s group via social media. Natalie advocates as Lighting fixtures Digicam Crohn’s.
InflammatoryBowelDisease.internet writings: https://inflammatoryboweldisease.internet/creator/natalieannhayden
Web page: https://lightscameracrohns.com/
Instagram: @natalieannhayden
Fb: https://www.fb.com/natalieasparacio/
Twitter: @nataliesparacio
Jenn Heater, Migraine Affected person Chief
When she left the body of workers because of her persistent migraine and trigeminal neuralgia, advocacy was once a lifeline for Jenn. She discovered new alternatives and goal in serving to the ones with migraine really feel much less on my own. Jenn ceaselessly wears migraine-related shirts or buttons, which function dialog starters. She works as a volunteer with the newsletter “My Power Mind” and is concerned with RetreatMigraine.
Jenn isn’t afraid to be truthful about her illness and publicly recognize the unhealthy days. She says, “I’m really not shy about posting how I think when I’m hurting – I believe it’s crucial a part of advocacy. It’s ok not to really feel ok and display what persistent sickness in reality looks as if.” Jenn advocates as Leader Scientific 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 existence shifted when her husband gained an competitive prostate most cancers prognosis. She went from being a spouse and mother to a spouse, mother, and caregiver. Linda felt stunned via her ignorance about prostate most cancers. She started her advocacy adventure to assist carry consciousness.
Linda created Petey the Prostate, a mascot comprised of a walnut – the dimensions of an ordinary prostate. Petey is a useful visible for discussing prostate most cancers. She and her husband lobbied Ohio lawmakers, and Ohio become the primary state to supply ZERO The Finish of Prostate Most cancers license plates! She advises, “Discuss out of your center about your adventure.” 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 once 29 when he was once identified with level IV non-small cellular lung most cancers. He found out the forget in lung most cancers training and consciousness because of the belief that “smoking reasons lung most cancers.” Stephen started his advocacy to switch that belief. His advocacy efforts led him to discovered a nonprofit, the Huff Mission, which is helping to fund more than a few lung most cancers tasks.
In all his paintings, Stephen specializes in representing and empowering the ones with lung most cancers. For him, “beating most cancers isn’t essentially being cancer-free. It’s now not letting most cancers scouse borrow any valuable moments.” Stephen advocates as The Huff Mission.
Web page: 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 once identified with level III breast most cancers earlier than her fortieth birthday. Already serving as an recommend for her son with particular wishes, she translated the ones abilities to her personal well being adventure.
After finishing most cancers remedies, Caroline based a nonprofit known as Twisted Red. She sought after to deal with the gaps she noticed in analysis investment for metastatic breast most cancers (MBC). Twisted Red is helping to beef up get admission to to deal with MBC via training and advocacy. Caroline loves her advocacy paintings, because it offers her “a chance to assist others and be informed from others as neatly.” Caroline advocates as Twisted Red.
Web page: 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 once a 23-year-old ballerina with the Joffrey Live performance Workforce in NYC when she was once identified with level IV MBC. She started her advocacy adventure to assist others be informed extra about MBC. Maggie combines her love of ballet and advocacy, giving grasp ballet categories and speaking to younger dancers about her adventure 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 hard to recommend, so it’s alright to take a step again and concentrate on your self.” Maggie advocates as The Bald Ballerina.
Web page: 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 prognosis as a non-smoker opened her eyes to the misconceptions of the illness. After the preliminary surprise of an inoperable, terminal level IV lung most cancers prognosis, she channeled her power into teaching. Lisa writes and speaks about her adventure with lung most cancers. She advocates on the native and nationwide ranges for expanded investment and consciousness.
If she may communicate to herself on the time of prognosis, she would proportion this knowledge: “It’s a day by day combat. However it’ll turn out to be monthly and year-to-year. Lengthy-term survival is conceivable, and it’ll occur for you.” Lisa advocates as Peace Lungs and Happiness.
LungCancer.internet writings: https://lungcancer.internet/creator/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 couple of Sclerosis Affected person Chief
Speaking with others was once probably the most useful factor for Randy after his MS prognosis. Social media had a profound impact on Randy’s MS adventure. Connecting and receiving give a boost to from others is helping to stop loneliness and isolation. He sees his advocacy adventure as “bringing the group in combination and making the affected person voices heard.” Randy advocates as Will have to Forestall MS.
Instagram: @must_stop_ms
Fb: https://www.fb.com/MustStopMS
Twitter: https://twitter.com/MustStopMS
TikTok: @muststopms
Weekly non-public crew chat, Mondays at 7:00 PM EST:
https://www.fb.com/teams/813774555344665
or on Twitter the use of #ChatMS
Susan Rahn, Metastatic Breast Most cancers Affected person Chief
Susan’s MBC prognosis got here de novo, with metastasis to her ribs and backbone. Advocacy gave her a voice. She now writes and blogs throughout a couple of platforms, serves on advocacy forums, and gifts at meetings for MBC. She even had the chance to be a part of an advocacy tale/video for Novartis, filmed in NYC.
Susan says, “I wish to know I helped make a distinction, that I channeled my anger and frustrations referring to this illness in a favorable means that may assist the ones identified lengthy after I’m long gone.” Susan advocates as Stickit2Stage4.
AdvancedBreastCancer.internet writings: https://advancedbreastcancer.internet/creator/susanrahn
Web page: https://stickit2stage4.com/
Instagram: @stickit2stage4
Fb: https://www.fb.com/stickit2stage4
Twitter: @Stickit2Stage4
Rick Redner, Prostate Most cancers Affected person Chief
Following his prognosis and a hit remedy of prostate most cancers, Rick and his spouse, Brenda, struggled of their marriage. He says, “The devastating high quality of existence problems following remedy for prostate most cancers are hardly ever mentioned. Males and {couples} want give a boost to!” This difficult length after most cancers remedy become the catalyst for his or her joint advocacy.
In combination, Rick and Brenda co-authored two books about their adventure: I Left My Prostate in San Francisco, The place’s Yours? and The whole thing You By no means Sought after to Learn about Erectile Disorder and Penile Implants: Finish Your Silence, Disappointment, 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 taking into consideration penile implants:
https://www.fb.com/teams/penileimplants/?ref=proportion
#3. A Fb web page for people 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.internet/
Put up-surgery Discussion board:
https://postsurgery.freeforums.internet/
Candice “CJ” Walker, Sort 2 Diabetes Affected person Chief
CJ’s sort 2 diabetes prognosis felt lonely and complicated. She lacked the sources to deal with this new fact. She started her advocacy adventure “to empower and inspire others on their persistent and autoimmune sickness trips, so that they shouldn’t have to head via their trips on my own.”
CJ makes use of her love of writing to recommend for diabetes. Social media opened an international of probabilities for attractive and sharing her tale. CJ advocates as The Genetic Diabetic.
Type2Diabetes.com writings: https://type2diabetes.com/creator/thegeneticdiabetic
Weblog: https://thegeneticdiabeticblog.com/
Instagram: @thegeneticdiabeticblog
Fb: https://www.fb.com/geneticdiabetic