Meet our CLC Patient Leaders!
What is a Patient Leader? Our Patient Leader group is made up of Chronic Love Club Members who are great advocates in their own right, and show love to our community. Patient Leaders are dedicated to using their voices and platforms to raise awareness for chronic illnesses and disabilities, and to spread the mission of Chronic Love Club.
Click the profile pictures to read their CLC member feature!
Tiff is from San Francisco Bay Area, California. She was diagnosed at birth with cystic fibrosis in 1989. Growing up, she was always going in and out of the hospital for CF lung infections and started to feel the affects in her early 20’s and was placed on the double lung transplant list at the age of 24 years old. Two years and 8 months later, she received 2 new lungs. She now can enjoy singing Taylor Swift at the top of her lungs, be an advocate, exercise, and make memories!
Lauren is from Toronto. After being diagnosed with a rare, one in a million bone tumor (Giant Cell Tumor) in her upper spine in 2020, she has undergone over 60 hours of surgery. These surgeries have left her with permanent nerve damage in her hands, but she is just happy to have been given a second chance at life after a scare with septic shock. She loves to read, explore new coffee shops, spend time in nature and cuddle with her dog. Discovering CLC has been such an important part of her healing and recovery journey!
Meet Ken. Ken was diagnosed with GIST Cancer (gastrointestinal stromal tumors) after originally going to the hospital following a car accident in 2013. Right now, Kenny is currently working at a Nature Educational Centre and he's also their wildlife and event photographer. He's been a part of Chronic Love Club since the beginning and says, "[CLC]... has been one of the best communities I've had the pleasure of experiencing. CLC is a beacon of hope for everyone!"
Samantha is a passionate chronic illness advocate who has been living with lupus since she was 14. When she was diagnosed, she searched the internet for someone to relate to but struggled to find any resources. This inspired Samantha to start sharing her story on YouTube in 2010, offering a relatable and informative perspective to empower others navigating life with chronic illness.
Samantha is happy to have found a supportive community of others with similar experiences online. With a deep commitment to making a difference in the community, Samantha strives to empower anyone facing similar struggles. Aside from her advocacy work, Samantha loves spending time with her husband, family, and two pups!
Meet Lacie! Lacie is a mental health + disability advocate from Arkansas. She was born with a rare eye-to-brain disorder, resulting in bilateral blindness. While finding a love for connection with others in the chronic community, she chronically fights a variety of illnesses, herself! Lacie lives with POTS, MCAS, GERD, etc.
Aside from illness— Lacie runs a bakery business, she graduated college with a degree in education, she is a homebody that finds comfort in rest, and is a dog mom to a 3 year old lab-mix named Ella!
“My voice is loud for those who have been silenced.”
Bev (she/her) is a healthcare and disability activist living in Toronto, Canada, with her partner and her dog. She has been diagnosed with endometriosis, adenomyosis, and idiopathic intracranial hypertension, and has also been on a long journey to diagnose a muscle disease. She uses her experiences with chronic and mental illness to shed light on the flaws in healthcare. Ultimately, Bev aims to inspire tangible change so that others don't have to have the same experiences as she has. She is also passionate about dismantling systemic ableism and our society's beliefs about health and disability.
Michelle is from New Jersey. She was diagnosed with degenerative jaw-joint disease in 2009. She just had her 28th surgery last month and has had 2 Prosthetic jaws. At the time being joint-less on one side and a prosthetic jaw joint on the other (because of infection). Despite the pain, pic-lines, surgeries and endless doctors. She continues to fight everyday. Her faith in God has brought her through. *With God all things are possible* She loves to cook and bake and loves fashion. She says, "I'm so thankful to have Chronic love club with their support and friendships they are always there for me! Beyond blessed to be apart of this amazing team.
Tymiak Hawkins is a loving husband, author, public speaker, and personal growth specialist. He is a native of Philadelphia, Pennsylvania. Tymiak was born with a rare condition of familial Cavernous Malformations, which are clusters of abnormal, tiny blood vessels and larger, stretched-out, thin-walled blood vessels filled with blood and located in the brain. Tymiak makes a choice daily to lead with light and positivity, as he not only lives with 3 rare diseases but also is a hemorrhagic brainstem stroke survivor, which he experienced in 2019. Tymiak lives with Cavernous Malformation, Wallenberg Syndrome, Horner Syndrome, PTSD, and Anxiety. With his mantra “Be The Light”, Tymiak uses his personal experiences of overcoming to help others navigate through their trauma and pain.
Lacey’s patient advocacy began when she was diagnosed with an extremely rare form of Ehlers Danlos Syndrome in 2017. Lacey is currently obtaining a Masters of Social Work degree, as she is also passionate about mental health. Lacey can usually be found either relaxing in a quiet coffee shop or watching movies with her husband and cat.
Claire is from Philadelphia, PA and just graduated from the University of Pittsburgh with a Bachelor's of Science in microbiology and also did minors in chemistry and applied statistics. Claire was a high-level soccer player growing up and sustained more concussions than can be counted. She was forced to retire from soccer in 2015 due to how severe her injuries were and the life-long consequences of so many concussions, like POTS, and persistent post-concussion syndrome with post-traumatic migraine. She subsequently ran cross country and track. In 2020, Claire was diagnosed with severe Crohn's disease, aggressive systemic mastocytosis, hypogammaglobulinemia, and mixed connective tissue disease. Recently she has been diagnosed with systemic vasculitis. She says, "As a scientist and a patient I feel I’m in a unique position to help arm other patients with information. I’m hopeful that the work I do can help other people advocate for themselves better".
Jewel is from Atlanta, GA. She is 36 years old and is married with 2 children.
In Aug 2021, Jewel was diagnosed with a rare disease, Cushing's Disease.
In Oct 2021, she underwent brain surgery to remove the pituitary tumor that was causing
her issues, then leaving her as adrenally insufficient. Due to this illness she has to take
daily steroids to keep her alive. Jewel now shares her story on instagram as
@thelipedemacushie, in hopes to bring awareness and create a safe space for the chronically ill.
Meet Katie! Katie has Neurofibromatosis Type 1, Scoliosis Kyphosis, an Incomplete Spinal Cord Injury as well as some additional chronic illnesses. This meant she spent a lot of time in hospital growing up.
She loves sharing her journey so others out there don’t feel alone. She feels like didn’t have much representation when she was little and she want to make a difference in the world.
In her spare time she tends to play around with makeup, or read a book!
Bradley is from Australia. He was diagnosed with vEDS - Vascular Ehlers Danlos Syndrome in January 2019. He was also diagnosed with CML - Chronic Myeloid Leukaemia in August 2020 & also hearing loss in his right ear in January 2021. He is a husband to his wife Holley and he's also a dad to my two sons Hunter and Isaac. He shares his journey with vEDS, CML & hearing loss to help raise awareness and support others with these health conditions and everyone else out there who has a chronic/invisible illness/illnesses.
Maudie is from Fort Worth, Texas and was diagnosed with with CRPS, ARVD/C and Heart Failure, before receiving a heart transplant. While managing her chronic illnesses, you can find her chasing after her toddler or trying a new craft project. The chronic illness community has provided her with so much love and encouragement over the years, that she enjoys providing support to those who now need it.
Meet Natalie! (but you can call her Nat) Nat was diagnosed with ulcerative colitis in 2017, right before entering her senior year of college and 2 months before running her first full marathon (talk about inconvenient timing... but then again, is a chronic illness diagnosis every convenient?!). She absolutely love reading, running and going on walks in nature, traveling and whipping up gut-friendly recipes (99% of which are sweet). She feels beyond thankful every day that supporting the chronic illness community is what she gets to do full-time. Supporting others with chronic illness lights her up because this community is what has helped her out of her darkest times with her own illness.
Meet Moyna, a multiple sclerosis advocate (MS) and content creator. Since her diagnosis in 2019, Moyna has been dedicated to making the MS community more representative, creating space for Black MS warriors, and empowering women to live a purposeful lifestyle outside of chronic illness. Moyna has collaborated with a variety of organizations to make the MS community more inclusive and give a voice to those who have often been overlooked.
Outside of advocacy, Moyna is a social media editor professionally for the brand Parents. She loves to spend time with her son and husband.