Global Brand Leaders Program
Advocate. Fundraise. Empower.
These are the pillars of InvisiYouth Charity's Global Brand Leaders Program. Teens and young adults from around the world are selected to work with InvisiYouth for activism and fundraising in this leadership program. These dedicated and passionate young adults have achieved some incredible accomplishments in their lives, all the while living with various chronic illnesses and disabilities. Our Brand Leaders are motivated and fun-loving individuals who contribute to their communities in the health sector and beyond, and will work with InvisiYouth to mutually promote empowerment and raise funds for all young adults living with all illnesses or disabilities. The objective: further InvisiYouth’s mission into their neighborhoods, to broaden awareness and access to supportive InvisiYouth events/programs that can be provided for our growing international young adult network, and provide a leadership opportunity of apprenticeship for many young adults in the nonprofit sector to excel their philanthropic endeavors.
Do you, or someone you know, want to become an InvisiYouth Brand Leader and make a difference? We want to hear from you, so Contact Us!
Sophie Ward, 25
United Kingdom: England
My name is Sophie Ward from Lancashire in England. I suffer with Lyme Disease, and went nine year undiagnosed until 2017. I was an elite swimmer, competing for Great Britain but was forced into retirement through ill health in 2010. Since being diagnosed, I have made it my mission to protect & save lives against the disease but also my passion to support people suffering, not just with Lyme but chronic illnesses. I hope my story inspires others that we can still chase our dreams and we DESERVE to live too! I have been blessed with appearing on BBC Breakfast, Sky News and Japanese World News, raising awareness. I was shortlisted at the European diversity awards for Campaigner of the year and the national diversity awards for positive role model for disability in 2018. From rebuilding my life I was inspired to release my book In The ‘Lyme’ Light - available on Amazon. I am SO excited to work with InvisiYouth for a second year. The charity is so close to my heart and I am so passionate about helping EVERYONE battling illness re-discovery themselves, their strength, self-worth and purpose in life and that is what InvisiYouth is all about.
Amy Saunders, 23
United Kingdom: England
I’m Amy and I’ve had ME (Myalgic Encephalomyelitis)/CFS (Chronic Fatigue Syndrome) since 2014 and have recently been diagnosed with PCOS (Polycystic ovary syndrome). I graduated last year and I’m now training to be a teacher part time, something which I never thought I’d be able to do with a chronic illness! I started my blog, Living with ME, in 2015, to talk about my ups and downs with chronic illness while trying to live a relatively ‘normal’ life. It has given me some incredible opportunities, including being a Global Brand Leader for InvisiYouth for a second year! I’m so excited to be working with them again and I’m looking forward to seeing what the charity achieves this year!
Blog: Living with ME
Instagram for Blogging in Bed: @bloggingbed
YouTube: Living with ME
Chloe Tear, 21
United Kingdom: England
I’m 21 years old and I’m a disability blogger and activist who is in my final year of university. I'm currently studying Psychology and Child Development, as well as being the Disabilities’ Officer for the Students’ Union. I have mild Cerebral Palsy (CP) and I’m registered as partially sighted. I set up my blog Life as a Cerebral Palsy Student back in 2013 when I wanted to raise awareness about my everyday experiences as a long adult with CP, recently I have also started to write about being partially sighted as my vision has begun to deteriorate. If I’m not studying, drinking coffee or blogging, I’m probably on Twitter documenting everyday situations and raising awareness around the negative attitudes and stereotypes of disabled people.
Shona Cobb, 21
United Kingdom: England
I'm Shona, a 21 year old disabled blogger, activist and writer. I've been writing my own blog for over seven years where, alongside my social media, I discuss disability-related topics as well as some of my passions such as theatre. I'm also a volunteer and occasionally speak in the media about disability. I had so much fun during my first year of being a Global Brand Leader, especially doing the Superhero Series triathlon for InvisiYouth, so I'm so excited to be back for another year!
Madi Vanstone, 17
My name is Madi Vanstone. I am 17 years old and I was diagnosed with Cystic Fibrosis at 8 months old. When I'm not busy doing my treatments and therapy’s to keep on top of my health, I work to spread CF Awareness. My journey as an advocate began when I fought the Canadian government for the coverage of a very effective and expensive medication “Kalydeco” which corrects the defective gene that causes Cystic Fibrosis. It only works for 3% of the CF population, and luckily I am in that 3%. After successfully gaining coverage to Kalydeco in 2014, I am continuing to work to have new medications made available to those who are also battling for their lives. I work hard to share my story in hopes to inspire others living with health challenges to - despite their challenges - live their best lives. I am ecstatic to be joining the InvisiYouth team for another year to help inspire others to live a beautiful life.
Facebook: Madi Vanstone
Facebook Group: Madi's Miracles
Aria Gaudet, 20
Hi everyone, my name is Aria Gaudet and I'm a 20 year old from Alberta, Canada. I keep busy as a student and a volunteer with health services here in my province. Over the past five years, I've learned how to use my experiences as a young person with chronic neuropathic pain to bring about change in the health care system. Part of the work I do is about connecting with health care providers and patients. We come together to help others in the system have open conversations about wellness. Taking part in these conversations is when I truly light up. Being a Brand Leader for InvisiYouth is an honor, one of my favorite resources they have is their podcast; it's full of compassion, understanding and Dominique leads us through the conversation with grace. The work InvisiYouth does is so aligned with empowering young people with chronic illness, helping them learn the skills they need to become the person they are meant to be. I'm super excited to be a part of the Brand Leader team again this year, and to keep sharing their message and vision.
Ashley Rose Murphy, 21
My name is Ashley Rose Murphy and I'm a 21 year old university student in Toronto, Canada. I was born with HIV, which quickly developed to AIDS and I was very sick on and off until I was approximately 5 years old, much healthier since then. I started speaking publicly about growing up with HIV when I was 10 years old after seeing some HIV positive peers go through some pretty tough bullying. I still faced the stigma and social isolation but I am the second youngest of ten kids so I had my own playmates right at home. I'm very proud to be a Global Brand Leader for InvisiYouth Charity for the second year and I hope to make a splash with my fundraising ideas while I educate others about HIV and other invisible illnesses.
InvisiYouth Chat Sessions Podcast: Episode1
Effie Koliopoulos, 31
United States: Illinois
Effie is writer, blogger, patient advocate, health coach, and fairly new YouTuber. She was diagnosed with juvenile rheumatoid arthritis 15 years ago. Effie loves the community connection and awareness that various organizations and charities such as, InvisiYouth create for those who are chronically ill. It’s her hope that by getting involved she can help further their mission, in a collaborative effort. In her spare time, Effie enjoys spending time with family, friends, going on walks and exercising, cooking, baking, traveling, taking time for self-care and being open to new experiences. Follow along at her website and blog, Rising Above rheumatoid arthritis and other social media channels. She currently lives in Chicago and is working on a few different projects, including her first children’s book for kids with juvenile arthritis.
Website/Blog: Rising Above RA
YouTube: RA and Myself
Molly Kestenbaum, 24
United States: New York
Molly Kestenbaum is a fashion designer and hearing disability advocate based in New York City. Molly works full-time at Ralph Lauren, but spends her off-time designing her own products that are 'inclusively' designed for those with disabilities. She also speaks at local public school to young kids about hearing loss, and the ways it has affected her life and the impact it has on the world of design. She is so excited to be a Global Brand Leader again as a GBL-All Star because it is such a special community of people and a place where she feels at home!
InvisiYouth Chat Sessions Podcast: Episode11
Honorary Global Brand Leader: Claire Wineland
April 10th 1997-September 2nd 2018
Tribute episode of InvisiYouth Chat Sessions: Episode14
Website: Claire's Place Foundation
Katy Baker, 22, UK: England
I have Scimitar Syndrome, a rare congenital heart defect where only 1 lung works. Due to this, there are further complications with my heart and back and mental health; showing that one health condition can affect so much more than is said on the tin. Since October 2016, I shot a film with Fixers UK and since then everything has lifted off! I have been part of InvisiYouth events like fundraising for them at the Superhero Tri adaptive sporting event at Dorney Lake, been on my local radio station and spoken at several events to medical professionals so they can get a real insight of what it is like living with a rare, chronic illness as a young person. Being in and out of hospital is part of my life but instead of it being a negative experience, I really try to turn it in to a positive and be my own advocate and educate others on my rare condition.
FixersUK YouTube feature: A Gymnast With One Lung?!
Katie Chesworth, 22, UK: England
Hi! I’m Katie and I have Ulcerative Colitis, an ileostomy and enteropathic arthritis. I was diagnosed with UC in 2013 when I was 16 and had surgery to create a stoma in 2015. The latest part of my chronic illness journey is being diagnosed with arthritis in 2018. I started writing a lifestyle and health blog mainly to help myself cope with everything but I soon started to realise that I could actually help people and be part of the online chronic illness community. I use my blog, social media and the media to show that just because we have chronic illnesses doesn’t mean we can’t LIVE our lives - whether it’s being able to travel, exercise or gain independence. I’m so excited to be involved with InvisiYouth - as young adult patients we definitely sometimes get overlooked! It’s so great to be working with them to spread the message of chronic illnesses.
Alice Tulip, 22, UK: England
My name is Alice and I run a “little bit of everything” blog! I got diagnosed with Ulcerative Colitis (a type of Inflammatory Bowel Disease) 2 years ago. My disease covered the entirety of my large bowel and was severe. After being on a consistent high dose of daily steroids, daily strong painkillers and trialling some grueling chemo-style treatments alongside them for 18 months, my body and mind just couldn’t take anymore. I had my large bowel removed and an ileostomy formed in September 2018 and although it’s not the life I wanted and I still experience other symptoms of the disease, it’s much better than the life I was living before. I regularly write about my journey with IBD and my stoma on my blog and now have a series called “Chronic Confessions” for other people to share their story about their illness journey, too! My illness has taught and shown me that all I want to do is help other people in a similar situation to live a good life. I am passionate about raising awareness, funds and abolishing ignorance around how debilitating and life-changing chronic illness can be!
Blog: Black Tulip Beauty
Lottie Amor, 28, UK: England
My name is Lottie, I live in London, and I have been fighting Chronic Neurological Lyme Disease since 2015. I also live with several conditions that have been caused by Lyme, the ones that affect me the most being Mast Cell Activation Syndrome & POTS. I went from being a perfectly healthy and happy Law student to not being able to read or write, and was bedridden before being finally diagnosed with Lyme in February 2017. I have been very fortunate to have experienced a lot of improvements through treatment, and I started blogging after receiving Stem Cell Treatment in 2018, to document my recovery and share my experience for other Lyme Disease patients. One of the most challenging parts of my illness has been coping with the isolation that comes from being unwell, and feeling so different from other people my age, so being part of the chronic illness community online has been invaluable to me, and I hope to contribute by sharing both the ups and downs of my health journey. When I am well enough I love to travel, journal and bake allergy-friendly treats.
Blog: Lottie Lyme
Ellen Blundson, 20, UK: Scotland
My name is Ellen Blunsdon and I live with Ehlers Danlos Syndrome. Since I began regularly using a walking stick to help with my chronic pain and fatigue, I have started to speak out about the injustice, stigma and prejudice that too often impacts your life as a disabled person. My work with the BBC, as a TEDx speaker and as a disability campaigner within my university has helped me to accept my own illness, while, hopefully, helping others to accept their's too. Advocating with the goal of empowerment is at the heart of my beliefs, with InvisiYouth’s platform providing an incredible opportunity to build an active community of strong, passionate and independent young people with disabilities. In my spare time, I am a history and politics student at the University of Edinburgh, former Editor in Chief and current Head Copy Editor of The Student newspaper, and Treasurer for Sexpression: Edinburgh who enjoys vegan food, acrylic nails and getting an early night.
Mellie White, 19, USA: North Carolina
Hi my name is Mellie, AKA, Thegirlwhocanteat. At the age of 13 years old my health pretty much spiraled downward, I started to feel ill when eating and within time it began to worsen until I lost the ability to eat anything at all, the reasoning is multiple GI conditions: Gastroparesis, Crohn’s disease and Pyloric stenosis. I have almost been Tube-Fed for 6 years now, within the first few years of my journey my confidence really was taking a toll because of being “different” other teenagers I knew didn’t have a Feeding-Tube, there was no one on TV or magazines who looked like me, I felt alone and like I was the only one going through this. After a lot of thought, I started to ponder the thought of doing something about it, I didn’t want anyone to have to feel the loneliness and isolation that I had for so long, which is when I discovered my dream; I started to get into the modeling and acting industry and from the ground up discovered what makes me feel alive as well as rebuilt my own self confidence whilst helping others feel represented.I now have been the very first Tube-Fed model to walk the runway of NYFW (two years in a row) it truly is my biggest honor to be able to actively change the world’s perception of disabled.
Taran Lancaster, 22, USA: Wisconsin
Hello there! My name is Taran & I am a certified child life specialist, bubble bath enthusiast, published author, shelter advocate at an abuse shelter, lover of dogs, health and fitness coach, volunteer at a a family grief group, and chronic warrior! After 22 years of searching for answers to my lifelong chronic pain, I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Pectus Excavatum, and Slipping Rib Syndrome. I strongly believe in treating my body as a whole, as multiple chronic illnesses can be emotionally overwhelming. Therefore, I try to incorporate fitness, nutrition, laughter, meditation, crying, and dog snuggles, as much as I incorporate medication. As a social media influencer, I thoroughly enjoy connecting with other chronic warriors and inspiring them to thrive despite any challenges they may be facing. I am thrilled to be expanding these personal connections by becoming a Brand Leader for InvisiYouth. I did not know anyone that experienced pain quite like I did while I was growing up, and I am hopeful that this position will allow me to be a positive role model to someone on a similar journey.
Website: Team Beach Body
Amazon for Book: The Fragments a Child Life Intern
Hannah Olson, 23, USA: Washington DC
My name is Hannah Olson and I’m a 23 year old entrepreneur, who happens to be living with chronic Lyme Disease. For a long time, I felt my illness was coming between me and fulfilling my career goals. The ambition was there, but so was the exhaustion and rigorous treatment schedule. Due to this, I ended up having to leave my first job. Although this experience was devastating, it was also the catalyst for starting my company, Chronically Capable. Our goal is to connect anyone who desires a job with meaningful work, regardless of their health status, so that no one has to decide between their health and life’s passions again.
Chronically Capable's Instagram: @chronicallycapable
Website: Chronically Capable
Elina Passant, 16, Australia
Elina Passant is a lifestyle and wellbeing blogger. For the past 8 years she has struggled with ongoing heath issues and injury. Starting with a Mystery Virus and ending with a Dysfunctional Nervous System. In between that experiencing Chronic Fatigue, a head injury resulting in Post Traumatic Vision Syndrome, Server Irritable Bowel and Chronic Pain. After her own frustrating and confusing journey trying to find answers to her illness and injury. Elina has since made it her mission to become a voice for the other, chronically confused Teens and Young Adults. Life has taken her down a different path than what she had originally planned, in doing so it has opened up new doorways to make a difference, She is really excited to be a Global Brand Leader for InvisiYouth and to get to work with the amazing team to create a supportive network for Teens and Young Adults in Australia and become a better advocate.
Website: Just So Elina
Mikaela Basile, 20 Canada
Mikaela Basile became a driven mental health, chronic illness and disability advocate after finding that stigma and inaccessibility affected her own journey of trying to find help and after she saw her own mother battle Lupus, Mixed Connective Tissue Disease, and Interstitial Lung Disease (#spooniefamily). Always being an anxious child, Mikaela began to suffer from consistent anxiety, panic attacks, and depressive episodes in her teens. She didn’t begin receiving adequate help until her final year of high-school when she was diagnosed with Generalized Anxiety Disorder, Panic Disorder, and Depression. Around this time, Mikaela also found that she was developing chronic pelvic pain and was recently diagnosed with Endometriosis. Hoping to help others manage their own conditions, diminish stigma and raise awareness, Mikaela created Lil’ Miss Anxious, a platform for those with lived experience of mental illness, chronic illness and disability. She also volunteers her time with multiple mental health organizations like Jack.org, Kelty Mental Health Resource Centre, and the Canadian Mental Health Association, as well as through her local youth council. Mikaela is thrilled to be a Brand Leader for InvisiYouth to encourage others to live their best life despite their illness.
Susie Ray, 21 Australia
My name is Susie Ray and I am a 21-year-old blogger and Business/Psychology student from Australia who is trying to find hope through life with chronic illness. Becoming bed bound at 18 meant I had to radically change my outlook and goals in life. So I started decided to start my blog and instagram, Find Your Own Hope, to share my experiences whilst aiming to encourage others to find their hope, too! In 2016 I began growing my hair and a few months ago I donated it to charity, whilst aiming to raise awareness and money for Chronic Fatigue Syndrome and Postural Orthostatic Tachychardia Syndrome. I am so excited to join InvisiYouth and become a Global Brand Leader as, like InvisYouth, I strive to help encourage and support others suffering from invisible illnesses!
Blog: Find Your Own Hope
Rachel Lang, 17 USA: Ohio
Hi, I'm Rachel! Most people see me as a healthy 17-year-old American girl. But what people don't know is that I have an invisible connective tissue disorder called Hypermobile Ehlers Danlos Syndrome. Because of my hEDS, I also have Fibromyalgia, GERD, and POTS. When I realized how few people and doctors understood EDS I knew I needed to speak up about it. So, I started an Instagram blog and have been educating people about my illnesses while simultaneously advocating for others facing the same battle. I have felt called to encourage others and share how God has been working in my life since being diagnosed. I am so excited to be partnering up with InvisiYouth as a Global Brand Leader this year! I can't wait to meet more people in the chronic illness community and work together to bring awareness to our struggles and disabilities.
Facebook: Rachel the Zebra
Angelina Truman, 21, UK: Wales
Hi, I'm Angelina (Ange for short) and I'm 21 from South Wales. I am the founder of a new clothing brand called Aura Clothing. Aura Clothing specializes in designing and creating custom clothing for those living with an ostomy. I was diagnosed with Crohn's at the age of 12 after months of feeling unwell. By the age of 13, after trying lots of medications, I had surgery to remove my large bowel and have my ileostomy. For me, my ostomy is simply a challenge to overcome. It’s not a barrier and I’m not about to let it stop me from doing anything. After all, it’s just a bag. I may be biased, but I think that sick people, especially young sick people are some of the most amazing and inspirational individuals you may meet. I am so excited and honored to be part of InvisiYouth. I’m excited to raise awareness and be part of a community that helps so many people.
Angelina's Instagram: @angelinatruman
Website: Aura Clothing
Blog: Aura Clothing-My Story
Aura Clothing Instagram: @aura.clothing_
Leah Rachel Caplan, 19, UK: England
Hi, I'm Leah and I'm a wheelchair performer and actor, specialising in Musical Theatre. I have Ehlers Danlos, POTS, and I'm also Visually Impaired. I have around 80 - 100 joint dislocations every day; and as well as performing in shows, musicals, and acting jobs through my agents at Zebedee Management - I am a philosophy undergraduate. I have been a wheelchair user for around a year and a half now, and am loving incorporating wheelchair-dance into shows. I have experience working under the campaigns teams at Guide Dogs UK and as a media volunteer at the RNIB, and I'm very excited to be working with InvisiYouth.
Spotlight: Leah's Acting Spotlight
Equity: Leah's Equity Actor Profile
Caitlyn Fulton, 18, UK: Scotland
I’m Caitlyn, 18 years old and have Cerebral Palsy. I don’t let my disability define me and I have a very positive outlook on life. I’m a first year university Music student, and I sing. Music is my passion as I can really be myself and let my creativity side flow; I have a stammer and when I sing it leaves me. It feels amazing as I don’t have to worry about the words I’m singing, it’s a sense of relief. I’m also very passionate about the rights for disabled people and inclusion for everyone as even though people are disabled in the world, it doesn’t mean they should be discriminated. We are just the same as everybody else and therefore should be allowed the same experiences as abled-bodied people. In my spare time, I play for a professional Boccia team is Glasgow, which is a sport that I really enjoy. I also model for Zebedee Management--an inclusive agency for people with disabilities. I am also an ambassador for the U.K Children’s Charity--Whizzkidz and it’s great as I love being a voice for others as well as myself and raising awareness. I hope to inspire other young women and men like myself who have the same condition and prove to them that anything is possible--nothing should hold you back. I’m very excited to be a Global Brand Leader for the InvisiYouth and I can’t wait to see where this journey takes me.
Zebedee Management: Caitlyn's Modeling Profile
Alice Forrester-Smith, 26, UK: England
Hi my name is Alice, I have right-sided Hemiplegia-Cerebral Palsy and controlled Epilepsy due to a stroke at or around birth. My drive is to influence, inspire and support others with disabilities, while doing this I also wish to reach those who do not have disabilities to raise awareness and understanding and hopefully motivate these individuals too. I have a passion for travelling which developed after watching my two older sisters travel the world solo, I thought if they can do it alone why cant I?! This is when I started writing my blog; to begin with it was just to document my travels. However, as time went on I found more and more people where interested in my story and the difficulties I faced. Aside from my blog I have written my own story, which has been published in the HemiHelp charity magazine. This story was about the achievements I have accomplished against the odds. When I’m not travelling, working or between numerous hospital appointments, I work with charities mentoring young people with disabilities and attend conferences to provide insight and ideas to assist in developing aid programs. I thrive on inspiring and supporting others no matter what their circumstances or abilities. I can’t wait to be a brand leader for InvisiYouth.
Elin Williams, 20, UK: Wales
I’m Elin, I’m a disability and lifestyle blogger and writer who is extremely passionate about raising awareness of disability and helping others in a similar situation. I have a degenerative eye condition called Retinitis Pigmentosa as well as living with chronic fatigue syndrome/ME. I’ve adopted a positive outlook on life as I’ve grown to accept my disability but, at the same time, I don’t gloss over the negatives of living with sight loss and ME and I always give an honest representation of my life by also hoping to empower and help others who are in a similar situation and help them to realise that they’re not alone. I am constantly striving for change and this is one of the main reasons why I’m so excited to be a Global Brand Leader for InvisiYouth. I think it’s really important for us all to join forces to raise awareness and give each other motivation and confidence and I love the way InvisiYouth helps people living with disabilities and chronic illnesses to do just that and more. I can’t change my disability but I can change and control how I react to it.
Blog: My Blurred World
Emily Rose, 23, UK: England
I was diagnosed with ulcerative colitis aged 21 after a three year struggle with symptoms. I also suffer with anxiety and panic disorder which were finally diagnosed aged 19 despite experiencing symptoms throughout my teens. I now use my own social media platforms to raise awareness of chronic health conditions, mental health and to promote body positivity. I want to help break down the stigma surrounding illness and help young people recognise their symptoms so they can access help faster. Over on Instagram I also share the brighter side of being a young Londoner, including everything from cute new brunch spots to midsize style inspiration. My latest venture is a podcast called the Curvy Ever After Diaries where I speak to guests about their journeys to overcome obstacles in order to love their bodies. With episodes covering everything from yoga to being “too fat” for fashion it has been an incredible way to raise awareness and give back. I can’t wait to work with Invisiyouth this year to keep making a difference.
Blog: A Whimsical Rose
Podcast: The Curvy Ever After Diaries
Caroline Appleton, 23, UK: England
I'm Caroline Appleton, I'm 23 years old and I live in the East Midlands, England in the United Kingdom. I'm a Psychology PhD student, and in my spare time I love reading, making cakes and going to the theatre. I have POTS and mental health issues, and I have volunteered with the United Kingdom-based nonprofit organization, The Mix UK, for many years. And I'm so excited to be a Global Brand Leader and spread the word about InvisiYouth Charity and living with invisible illnesses.
Amber Davies, 21, UK: Wales
After suffering with symptoms while growing up, I was diagnosed with Ulcerative Colitis, one of the main forms of IBD (Irritable Bowel Disease) aged 13. There is no cure. I began working my way through the available treatments with no success. At 17 I underwent emergency surgery to remove my diseased colon and form a temporary stoma. By 19, the remainder of my colon and rectum had been removed and my stoma made permanent. I feel extremely strongly about sharing my life and experiences as a young person with a stoma as there are many taboos and subjects surrounding the subject of bowel disease. Through use of my social media, and involvement in many projects and campaigns, I try to show that life with a stoma is in fact the beginning, not the end and, that anything is achievable. I like to share all tips and tricks I discover in day to day life with a chronic illness and a stoma including fashion, social, relationships, UNI life, fitness and many more. I feel really honoured and excited to be involved with InvisiYouth and become a brand leader - I feel like having such people to look up to and communicate with when I was going through a tough time in my teenage years would have been hugely beneficial in so many ways.
Sophia Colón Roosevelt, 17, USA: New Jersey
Hi! I’m Sophia and I have a connective tissue disorder called Ehlers-Danlos Syndrome. My mother had EDS, so I’ve been diagnosed with it my whole life, although my symptoms didn’t start to interfere with my life until I was 12 or so. For high school, I decided to switch to online learning because the wear and tear on my body that comes from going to a brick and mortar school was exacerbating my condition. Watching my body deteriorate especially in my early teens often left me feeling powerless when I was in bed or at the hospital while my friends were together having fun. While l was part of a few online support groups here and there, I had absolutely no idea about the many badass chronic illness advocates who were fighting to be heard on social media, online, or elsewhere. About two years ago I discovered this amazing community of mostly teens and while I was hesitant at first to speak out, I now realize that I want to be someone my younger self would look up to. I am an ambassador for Sick Chicks and have worked with AWARE Causes. I also enjoy acting and got to co-star in an independent feature called “Starfish” a few years ago. I’m so excited to be part of the InvisiYouth team and love that it aims to empower teens with chronic health conditions to be active participants in all aspects of their lives.
Kiki Sepp 17, USA: Pennsylvania
I am about to turn 18 years old and I have Amplified Musculoskeletal Pain Syndrome (AMPS) also known as Reflex Sympathetic Dystrophy (RSD). I love music, it's like my home. My favorite thing in the entire world to do is to help people, whether it's through helping people with their homework, babysitting, volunteering, etc, being able to put a smile on someone’s face is the best feeling.
Website: Kiki Sepp Music
YouTube: Kiki Sepp
Nadine Cruz, 35, USA: New York
Hi there my name is Nadine but everyone calls me Nay! I'm 35 years old, born and raised in the Bronx, NY and I love dancing salsa and hip hop, unfortunately living with a chronic illness my passion for dancing had to be put on hold however I still dance in the comfort of my home when my body allows for it. In January 2018, I was diagnosed with Ankylosing Spondylitis and fibromyalgia. To correct my jaw asymmetry I had to undergo surgery they said treatment would not correct the issue. In April 2018, I underwent a lefort l osteotomy, bilateral sagittal split Ramus osteotomies and a genioplasty to correct my right condylar resorption and a dentofacial deformity that was limiting my functions. And I tested positive for a gene called HLA-B27 which is when i was diagnosed. The whole year of 2018 was really rough on me so in 2019 I wanted to stop felling sorry for myself and fight for my life back, for better solutions and for others so I started a online support group called Nay's Chronic Gang for anyone battling chronic illness. I also started my own movement Nay (Nap All Year) to spread awareness about people living with AS/Fibro and any other chronic illness affecting so many lives. I'm so happy and excited to become a Global Brand Leader for InvisiYouth my hopes are to continue to spread awareness, my knowledge and help others on their journey because together we are powerful!
Website: Nap All Year
Anikka Cassidy, 17, Canada
Hey! My name is Anikka, I am a chronic illness advocate and full time High School student in my senior year. I have 15 different physical health ailments, the worst being Complex Regional Pain Syndrome, Postural Orthostatic Tachycardia Syndrome, Hypermobility Syndrome, and Mast Cell Activation Syndrome. I haven’t let this stop me from doing everything I want to do, sometimes I just need to do it differently. I run @confidentlychronic, an account I’ve dedicated to bringing awareness to both mine and others chronic ailments as well as mental illness, body positivity, and just the appreciation of life in general. I am so excited and honoured to be apart of InvisiYouth to help bring awareness to all types of people, disorders, and much more!
Blog: Confidently Chronic
YouTube: Anikka's Channel
Mona Li, 23 Canada
My name is Mona Li, I’m Chinese-Canadian, and I’m a Biomedical Communications (MScBMC) student based in Toronto. Formerly a Jack.org chapter executive, I’ve been a member of the mental health advocacy community for over five years, but only recently started to experience the system as a patient. Alongside anxiety and depression (an iconic duo), I also manage the asthma from childhood that I never outgrew. As a medical illustrator, believer in compassion, and person who loves telling stories, I make webcomics and use social media to promote health literacy and share personal experiences with physical/mental health. As a Brand Leader, I’m joining InvisiYouth in helping folks who are struggling to identify their health concerns, validate their experiences, and get support sooner.
Website: Mona Li Visuals
Ruby Jones, 22 UK: England
My name is Ruby and I am a 22 year old disabled student from Devon. I have EDS and POTS and I am also the face behind Chronically Cute Cards; a project that sends free, handmade, personalised cards to people living with chronic illness or disability. I love to sing, paint and read until I get migraines. I use my social media platforms to challenge existing stereotypes surrounding what disability ‘looks’ like, and hope to be a voice for a community that is so often overlooked. Accepting my disability as a part of my identity has really helped me come to terms with who I am, and I hope to prove to people, especially young women living with invisible illnesses, that they deserve the absolute best.
Cards Website: Chronically Cute Cards
Blog: Ruby J0nes
Leila Santana, 15 USA: Virginia
My name is Leila Santana, I am 15 years old, and I have Cystic Fibrosis, I was diagnosed at age 2. I also have Gastroparesis, MCAS (Mast Cell Activation Syndrome), and Hyperadrenergic POTS. I recently started documenting my journey on my Instagram (._), I have a J-tube and getting surgery soon for a GJ because of frequent aspiration pneumonia from GERD and the inability to drain/vent. I also have a Port for frequent antibiotics for CF, fluids, blood draws, etcetera. I used to be a swimmer and competed in other competitive sports until my health got progressively worse, and I had no choice but the stop. It was one of the hardest things to do but I am so thankful to have met the people I have met, continue to meet new people, and the CFers online that I have had the pleasure of starting friendships with! I am so excited to be starting my first year as a Global Brand Leader for InvisiYouth Charity and help to inspire others with chronic illness to live their best life.
Rachel Hoy, 27 Australia
My name is Rach and I am 27 from NSW, Australia. I am the face behind teespoonies - ethically made 100% organic cotton tees for chronic illness warriors. I've been battling Lyme + co since 2014. I also have POTS & autoimmune conditions. I am a qualified counsellor but right now I'm focusing on healing and raising awareness of chronic illness through my Etsy business. I also do some photography and coach a local girl's soccer team when I'm well enough. I'm excited to join InvisiYouth as a Global Brand Leader to advocate for and support young people navigating life with chronic illness.
Website: TeeSpoonies Etsy Shop
Sofia Ali, 19 Canada
I am Sofia Ali, I am 19 years old, and I live in Toronto, Canada. I was diagnosed with Ulcerative Colitis in 2016, and was rushed into emergency surgery to remove my colon and receive my ostomy bag five months after my diagnosis. Since then I have suffered through many complications, challenges, and struggles due to my disease, but it has made me stronger and more resilient then I could have ever imagined! Despite all that, I just finished my first year of university, I am working, I have a loving family and supportive friends, and have found an amazing community after documenting my journey on social media. I have met friends that understand me, I've spoken with people who are facing the same battles, and most importantly I have found my passion: helping others. After years of fighting many losing battles with my disease, it has finally led me to something positive. Social media gave me an outlet and it has helped me through some of the darkest times in my life, showing me that even just the ability to help one person is something that should be celebrated. That's why I am so excited about my role as a Global Brand Leader, and I am ready to help my fellow invisible illness warriors and raise awareness about the silent battles we are all fighting!