In 2022, the Social Well being Community partnered with a number of improbable affected person leaders to create impactful social media campaigns. As a part of this partnership, we need to spotlight those superb people’ advocacy paintings.
Tanya Freirich, Lupus Affected person Chief
Tanya combines her pastime as a registered dietician nutritionist with advocating for lupus. Navigating her personal lupus analysis, she discovered that way of life and nutritional adjustments helped her arrange the illness. Tanya loves connecting with others within the lupus group and offering schooling about dietary improve. She enjoys attractive in quite a lot of techniques thru writing, talking, and social media.
Tanya says, “I am hoping to proceed to succeed in the folks which might be all for residing higher with lupus and lend a hand 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 recognized with a couple of sclerosis (MS) when he was once in school. Devin was once accustomed to MS, as his grandfather additionally lived with the illness. He had noticed the lack of expertise for MS earlier than his personal analysis. Devin sees his advocacy paintings to be able to lend a hand others by means of sharing his tale.
He lately collaborated with Surprise Comics at the Darkhawk comedian books, providing steering on what existence would seem like for a superhero with MS. He advised us, “I were given to discuss my existence with MS at the back of one of the vital problems. That was once an improbable 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 getting into advocacy. She explains, “I determined it was once time to open up and get started being vocal about my adventure so I may just make the revel in much less daunting and keeping apart for others.”
Navigating 3 pregnancies with Crohn’s, Natalie brings visibility and improve to others bearing in mind being pregnant and parenting with Crohn’s. She makes use of her journalism storytelling talents to proportion her adventure with others. She values the various connections she makes with the Crohn’s group thru social media. Natalie advocates as Lighting Digicam Crohn’s.
InflammatoryBowelDisease.web writings: https://inflammatoryboweldisease.web/writer/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 staff because of her persistent migraine and trigeminal neuralgia, advocacy was once a lifeline for Jenn. She discovered new alternatives and function in serving to the ones with migraine really feel much less on my own. Jenn often 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 fair about her illness and publicly recognize the unhealthy days. She says, “It’s not that i am 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 truly seems like.” Jenn advocates as Leader Clinical 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 analysis. She went from being a spouse and mother to a spouse, mother, and caregiver. Linda felt surprised by means of her lack of information about prostate most cancers. She started her advocacy adventure to lend a hand carry consciousness.
Linda created Petey the Prostate, a mascot constituted of a walnut – the scale of an ordinary prostate. Petey is a useful visible for discussing prostate most cancers. She and her husband lobbied Ohio lawmakers, and Ohio turned into the primary state to provide ZERO The Finish of Prostate Most cancers license plates! She advises, “Discuss out of your middle 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 recognized with level IV non-small cellular lung most cancers. He found out the forget in lung most cancers schooling and consciousness because of the belief that “smoking reasons lung most cancers.” Stephen started his advocacy to modify that belief. His advocacy efforts led him to discovered a nonprofit, the Huff Undertaking, which is helping to fund quite a lot of lung most cancers projects.
In all his paintings, Stephen makes a speciality of representing and empowering the ones with lung most cancers. For him, “beating most cancers isn’t essentially being cancer-free. It’s no longer letting most cancers thieve any treasured moments.” Stephen advocates as The Huff Undertaking.
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 recognized with level III breast most cancers earlier than her fortieth birthday. Already serving as an suggest for her son with particular wishes, she translated the ones talents to her personal well being adventure.
After finishing most cancers therapies, Caroline based a nonprofit referred to as Twisted Purple. She sought after to handle the gaps she noticed in analysis investment for metastatic breast most cancers (MBC). Twisted Purple is helping to fortify get right of entry to to deal with MBC thru schooling and advocacy. Caroline loves her advocacy paintings, because it provides her “a chance to lend a hand others and be told from others as smartly.” Caroline advocates as Twisted Purple.
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 Team in NYC when she was once recognized with level IV MBC. She started her advocacy adventure to lend a hand others be told 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 arduous to suggest, 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 analysis 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 analysis, 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 just communicate to herself on the time of analysis, she would proportion this knowledge: “It’s a daily struggle. However it is going to change into monthly and year-to-year. Lengthy-term survival is conceivable, and it is going to 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 couple of Sclerosis Affected person Chief
Speaking with others was once probably the most useful factor for Randy after his MS analysis. Social media had a profound impact on Randy’s MS adventure. Connecting and receiving improve from others is helping to forestall 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 Prevent MS.
Instagram: @must_stop_ms
Fb: https://www.fb.com/MustStopMS
Twitter: https://twitter.com/MustStopMS
TikTok: @muststopms
Weekly personal 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 analysis 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 need to know I helped make a distinction, that I channeled my anger and frustrations relating to this illness in a good means that can lend a hand the ones recognized lengthy after I’m long past.” Susan advocates as Stickit2Stage4.
AdvancedBreastCancer.web writings: https://advancedbreastcancer.web/writer/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 analysis 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 mentioned. Males and {couples} want improve!” This difficult duration after most cancers remedy turned into 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 entirety You By no means Sought after to Find out about Erectile Disorder and Penile Implants: Finish Your Silence, Unhappiness, Struggling, and Disgrace.
Weblog: https://whereisyourprostate.blogspot.com
Fb:
#1. A Fb web page for pre & submit surgical procedure:
https://www.fb.com/pg/whereisyourprostate/about/
#2. A Fb web page for males bearing in mind 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.web/
Publish-surgery Discussion board:
https://postsurgery.freeforums.web/
Candice “CJ” Walker, Kind 2 Diabetes Affected person Chief
CJ’s sort 2 diabetes analysis felt lonely and complicated. She lacked the assets to deal with this new fact. She started her advocacy adventure “to empower and inspire others on their persistent and autoimmune sickness trips, in order that they shouldn’t have to head thru their trips on my own.”
CJ makes use of her love of writing to suggest 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/writer/thegeneticdiabetic
Weblog: https://thegeneticdiabeticblog.com/
Instagram: @thegeneticdiabeticblog
Fb: https://www.fb.com/geneticdiabetic