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In 2022, Social Well being Community partnered with a number of wonderful affected person leaders to create impactful campaigns on social media. As a part of this affiliation, we need to spotlight the advocacy work of those wonderful individuals.

Tanya Freirich, Lupus Affected person Chief

Tanya combines her ardour as a registered dietitian nutritionist with lupus advocacy. Navigating her personal lupus analysis, she found that modifications in her way of life and weight loss program helped her handle the illness. Tanya loves connecting with others within the lupus group and offering training on dietary help. She likes to be concerned in varied methods via writing, talking, and social media.

Tanya says, “I sit up for persevering with to succeed in out to and assist people who find themselves all for dwelling higher with lupus!” Tanya advocates as a lupus dietitian.

Web site: https://www.thelupusdietitian.com/
instagram: @thelupusdietitian
Fb: https://www.fb.com/TheLupusDietitian
Tik Tok: @thelupusdietitian

Devin Garlit, A number of Sclerosis Affected person Chief

Devin was recognized with a number of sclerosis (MS) when he was in faculty. Devin was accustomed to MS as his grandfather additionally lived with the illness. He had famous the lack of expertise of MS earlier than his personal analysis. Devin sees his advocacy work as a approach to assist others by sharing his story.

He not too long ago collaborated with Marvel Comics on the Darkhawk comics, providing steering on what life could be like as a superhero with MS. He instructed us, “I’ve to speak about my life with MS on the finish of one of many points. That was an unbelievable alternative for me and for everybody with MS.”

Writing from MultipleSclerosis.web: https://multiplesclerosis.web/creator/dev71

Natalie Hayden, Crohn’s Illness/Inflammatory Bowel Illness Affected person Chief

Natalie saved the primary 10 years of her Crohn’s analysis a secret earlier than turning to advocacy. She explains, “I made a decision it was time to open up and begin speaking about my journey so I might make the expertise much less daunting and isolating for others.”

Navigating 3 Crohn’s pregnancies, Natalie gives visibility and help to others contemplating being pregnant and parenting with Crohn’s. She makes use of her journalistic storytelling abilities to share her journey with others. She values ​​the numerous connections she makes with the Crohn’s group via social media. Natalie defends the way you look Crohn’s digicam.

Writing from InflammatoryBowelDisease.web: https://inflammatoryboweldisease.web/creator/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 as a consequence of her continual migraine and trigeminal neuralgia, advocacy was a lifeline for Jenn. She discovered new alternatives and goal in serving to individuals with migraines really feel much less alone. Jenn recurrently wears migraine-related shirts or buttons, which function dialog starters. She volunteers with the publication “My Power Mind” and is concerned with RetreatMigraine.

Jenn is not afraid to be sincere about her sickness and publicly acknowledge the unhealthy days. She says: “I am not ashamed to submit how I really feel after I’m in ache; I believe it is an necessary a part of protection. It is okay to not really feel good and present what a continual sickness is admittedly like.” Jenn advocates as Head of Medical Oddities.

Weblog: https://medicallyodd.com/
instagram: @jefemedicaloddity
Fb: https://www.fb.com/MedicalOddity
Twitter: @medical_oddity

Linda Hoetger, Prostate Most cancers Affected person Chief

Linda’s life modified when her husband acquired an aggressive analysis of prostate most cancers. She went from being a spouse and mom to a spouse, mom and caretaker. Linda was stunned by her lack of awareness about prostate most cancers. She started her advocacy journey to assist elevate consciousness.

Linda created Petey the Prostate, a pet made out of a walnut, the scale of a traditional prostate. Petey is a visible support for speaking about prostate most cancers. She and her husband lobbied Ohio legislators, and Ohio turned the primary state to supply ZERO plates for the top of prostate most cancers. She advises: “Communicate out of your coronary heart about your journey.” Linda pleads 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 years previous when he was recognized with stage IV non-small cell lung most cancers. He found the neglect of lung most cancers training and consciousness because of the notion that “smoking causes lung most cancers”. Stephen began defending him to vary that notion. His advocacy efforts led him to discovered a nonprofit group, the Huff Challenge, which helps fund varied initiatives in opposition to lung most cancers.

In all of his work, Stephen focuses on representing and empowering individuals with lung most cancers. For him, “beating most cancers is just not essentially being freed from most cancers. It isn’t letting most cancers steal any valuable second.” Stephen advocates as The Huff Challenge.

Web site: https://www.thehuffproject.org/#/
instagram: @thehuffproject
Fb: https://www.fb.com/TheHuffProject
Twitter: @elhuffproyecto

Caroline Johnson, Metastatic Breast Most cancers Affected person Chief

Caroline was recognized with stage III breast most cancers earlier than her fortieth birthday. Already appearing as an advocate for her son with particular wants, she translated these abilities into her personal well being journey.

After finishing most cancers remedies, Caroline based a non-profit group referred to as Twisted Pink. She wished to deal with the gaps she noticed in analysis funding for metastatic breast most cancers (MBC). Twisted Pink helps enhance entry to take care of MBC via training and advocacy. Caroline loves her advocacy work because it offers her “a possibility to assist others and be taught from others as properly”. Caroline defends as Twisted Pink.

Web site: https://www.twistedpink.org/
instagram: @twistedpinkorg
Fb: https://www.fb.com/twistedpinkcharity
Twitter: @curatwistedpink
Tik Tok: @twistedpinkorg

Maggie Kudirka, Metastatic Breast Most cancers Affected person Chief

Maggie was a 23-year-old dancer with the Joffrey Live performance Group in New York when she was recognized with stage IV MBC. She began her advocacy journey to assist others be taught extra about MBC. Maggie combines her love of ballet and advocacy, giving grasp ballet lessons and chatting with younger dancers about her journey with MBC. She has additionally participated in profit balls and has spoken on behalf of advocacy organizations.

Maggie affirms the significance of balancing promotion with self-care. She says, “Advocacy might be exhausting, so it is okay to take a step again and concentrate on your self.” Maggie pleads because 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 a analysis of terminal and inoperable stage IV lung most cancers, she channeled her vitality into training. Lisa writes and talks about her journey with lung most cancers. She advocates regionally and nationally for elevated funding and consciousness.

If she might speak to herself on the time of analysis, she would share this knowledge: “It is a day-to-day battle. However it can flip month to month and 12 months to 12 months. Lengthy-term survival is feasible and it’ll occur for you.” Lisa defends as Lungs of Peace and Happiness.

LungCancer.web Writing: https://lungcancer.web/creator/lisamoran
Weblog: http://www.peacelunghappiness.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 to different individuals was essentially the most useful for Randy after his MS analysis. Social media had a profound impact on Randy’s MS journey. Connecting with and receiving help from others helps forestall loneliness and isolation. He sees his advocacy journey as “bringing the group collectively and making the voices of sufferers heard.” Randy defends as Should Cease MS.

instagram: @must_stop_ms
Fb: https://www.fb.com/MustStopMS
Twitter: https://twitter.com/MustStopMS
Tik Tok: @muststopms

Weekly Personal 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 MSC analysis got here de novo, with metastases to the ribs and backbone. Defending her gave him a voice. She now writes and blogs on a number of platforms, sits on advocacy boards, and presents at conferences for MBC. She even received the possibility to be part of a Novartis advocacy story/video, filmed in New York Metropolis.

Says Susan, “I need to know that I helped make a distinction, that I channeled my anger and frustrations about this illness in a constructive approach that may assist these recognized lengthy after I am gone.” Susan defends as Stickit2Stage4.

Writing from AdvancedBreastCancer.web: https://advancedbreastcancer.web/creator/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 for prostate most cancers, Rick and his spouse, Brenda, struggled of their marriage. He says: “The devastating quality-of-life issues after 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 for him.

Collectively Rick and Brenda wrote two books about their journey: I left my prostate in San Francisco, the place is yours? Y Every little thing you by no means wished to learn 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 earlier than and after 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 individuals coping with erectile dysfunction:
https://www.fb.com/teams/1183346195018101/

#4. A Fb web page for Christians going through most cancers:
https://www.fb.com/christianscopingwithcancer/

Boards:
Preoperative Discussion board:
https://presurgery.freeforums.web/

Postoperative discussion board:
https://postsurgery.freeforums.web/

Candice “CJ” Walker, Sort 2 Diabetes Affected person Chief

CJ’s sort 2 diabetes analysis felt lonely and complicated. She lacked the sources to take care of this new actuality. He started his advocacy journey “to empower and encourage others on their continual and autoimmune illness journeys, so they would not need to undergo their journeys alone.”

CJ makes use of her love of writing to advocate for diabetes. Social networks opened up a world of potentialities to take part and share her story. CJ advocates because the genetic diabetic.

Writing from Type2Diabetes.com: https://type2diabetes.com/creator/thegeneticdiabetic
Weblog: https://thegeneticdiabeticblog.com/
instagram: @thegeneticdiabeticblog
Fb: https://www.fb.com/geneticdiabetic


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Meet Some of Our 2022 Content Creators!