Spotlight Story Program: Meet Caitlyn Fulton

Meet Caitlyn Fulton

Growing up in Scotland with cerebral palsy, Caitlyn Fulton has challenged herself to not only become her biggest cheerleader for her daily life, but to take her hobbies and bring them into the forefront of the work and activism she does. Having studied music in university and being a model, Caitlyn is constantly free in using media and art to break stigmas while also empowering other young people that they can find their inner strength in the things they love to do. While Caitlyn’s CP doesn’t define her, it gives her a lens to tackle life and achieve her goals, and we’re proud that she’s a GBL-All Star in Caitlyn’s second year working with InvisiYouth in our leadership program! Caitlyn gives so much good advice your young adults to finds ways to enjoy life even in those medical settings, and how to have your chronic illness/disability be not your sole identifier but one of the traits that make you unique!

Hi! My name is Caitlyn, I’m 20 from Scotland. I was born premature and as a result was diagnosed with Cerebral Palsy. CP is a neurological condition which is caused by damage to the brain. For me, CP effects my balance and coordination.

I’ve used my health journey in my work by exploring the things I love, like my passion for music. I studied it at Diploma level [in university], and alongside music as a whole, I’m a vocalist at heart and love to sing. I can just be me and not think of my condition; it’s a freeing feeling of enjoyment too.

Secondly, I’ve used my health journey to inspire others by becoming a model—signed with Zebedee Talent—breaking down the barriers and stigmas about disability that the fashion and media industry hold.

It allows me to challenge stigmas on disability and raising awareness of disabled people in wheelchairs specifically by being seen in a positive light and that’s what I’m aiming for! There’s still a long way to go for the industry to be completely inclusive but in the last couple of years there’s been a real positive change within – step/wheel in the right direction.

I also play Boccia (a Paralympic sport) with a recognised team in Glasgow as part of Scottish Disability Sport. By doing so, not only am I raising awareness of disability but also women in sport too as it’s a rather male-dominated field.

Writing/blogging is recent addition but I like writing about topics that are important to me, such as disability rights and my hobbies which hopefully resonates with other young people as it’s great for them to know others out there like myself feel the same way as them. Through my health journey, I’ve grown in knowing I shouldn’t feel bad for having Cerebral Palsy. It makes me who I am, though it doesn’t define me. I wouldn’t be the person I am today if I was non-disabled and I don’t know if I would want to be a totally different person – I’m happy being in the skin I’m in because I’m unique.

I’ve found ways to support others by sharing similar experiences and being a source of encouragement that while yes, life throws a lot of challenges, I always tackle them head on and think there’s always a reason why. I’m a true believer in the phrase, “things happen for a reason’.”

It’s been great having support groups too, connecting with others who have the same conditions and interests as myself. Social media is certainly a great tool to connect and interact. Especially with the likes of InvisiYouth, it’s been brilliant being part of such a great organisation and connecting with other young people worldwide.

When I look at my experiences in medical settings, there’s things I’ve learned that I’d love to share with others to improve their experiences. Even if it’s your first appointment in a new hospital where you’ve been referred for treatment, changing consultants or moving up from child to adult services -I know how daunting all of this can be as I’ve experienced it first hand – become familiar with your surroundings, get to know the nurses/staff who’ll be caring for you if its procedure-related.

Also bring home comforts, items that make you feel calm.

Whenever I went in for operations knowing it would be a good few weeks before going home, it helped knowing who the team members were that would have me in their care and over time there’s a bond that’s created. It’s bittersweet going home, I always felt sad saying goodbye when it was time to go yet it was a great feeling to know I was on the right track and made great progress.

In your daily life, know that your condition doesn’t defy you. Yes, it’s part of you but your worth so much more with the interests you have, outlays that shaped you, make you who you are. Dealing with my health has shaped me in knowing that I’ll experience many hurdles in life but I’ll always get through them no matter what. As I’ve gotten older I don’t feel embarrassed about having a disability and now I embrace it—it’s my superpower and I have a story to tell.

My main message: There will be good and bad days but know that your condition makes you who you are. Strive to be the best version of yourself, make the most of it.

I always say to myself ‘I was given this life because I was strong enough to live it’: strong enough to the face the battles that come my way and cherish the moments in live that are to be remembered. Look your bad days in the eye and know you’ll overcome them, maybe not tomorrow or the next day but you will achieve. Whenever you feel good in yourself, you can get through it all and survived another day, that’s what I tell myself and you should too – be proud!

Spotlight Story Program: Meet Bridget Gum

Meet Bridget Gum

Our latest Spotlight Story comes from the East Coast of the United States, and this is not just any addition into our Spotlight Story Program, but from a special young woman who has worked her way up through InvisiYouth’s programming. 18-year-old Bridget Gum because as a volunteer with InvisiYouth during her senior year of high school, and transitioned into our international leadership program, Global Brand Leaders as a GBL-Ambassador. Bridget has fused her experience living with a rare autoimmune disorder called Transverse Myelitis and her love of advocacy, into a great future for her work as she’s now a student at Rider University with aims of helping others. 

My name is Bridget Gum and on November 11, 2002 I was found in my crib completely limp. Since I was a seven month old baby, it made it very challenging to diagnose me because I couldn’t communicate loss of sensation or ability to move, or even if I lost control of my bowel and bladder capabilities.

After six months of living in and out of hospitals and nearly dying a couple of times, I was finally diagnosed with a rare auto-immune disorder called Transverse Myelitis. This disorder attacked my immune system as well as my spinal cord, at the C5-C8 level of my spine, right around what the doctors call “Hangman’s Noose”, which is called that because most people lose the ability to breath and die.

Thankfully, for reasons no one can explain, my spinal cord injury is incomplete, which means my sensory and motor level doesn’t just stop at one level.

As a very young child, I was in therapy for an extremely long time so as to hopefully regain as much function as possible, however, I was only able to have movement and sensation from my shoulders up. Finally, when it was time, I was allowed to go to preschool. I was so excited. A couple of years ago, I found a comic that summarized my experience perfectly: a girl who uses a wheelchair at a specially designed desk for a wheelchair completely oblivious to the fact she was different.

My family treated me normally so when I went to school, I was made aware of how different I was. I grew up in an almost entirely able-bodied community, until I was in fourth grade. I finally went to a family summer camp made entirely for others with my disability, which was life-changing.

It was the first time I was with others like me, and not just being sick in a hospital together, actually doing fun activities. This was when I decided to educate myself on disabled culture and to become an advocate, for both myself and others. I began to work with my therapists to become more independent and began to work with my school to get better services and more appropriate accommodations. In eighth grade, I was diagnosed with epilepsy, completely unrelated to my previous disability.

The memory reset and medications from the seizures completely changed me and how I saw the world. I then became more open and helpful to others because I saw how helpful other people were to me and I really wanted to return that favor to the world.

Throughout my many years of hospitalizations and living with this disability, I learned a lot of responsibility and maturity, which is almost a requirement for living with a disability if you want independence. 

These qualities often seep into my personal life to the point where my friends call me the “Mom” of the group because I’m always helping people, listen to their problems, and I’m prepared for every situation, often in case of emergency.

While the lives of people with disabilities are very different, I wish we could live in a world where it doesn’t have to be.

Of course there will always be an element of medical needs that is different than an able-bodied person, I hope that others with disabilities won’t have to fight for accommodations or be surprised and overly grateful when someone makes you feel like an equal, and not someone who needs to be helped or as a burden.

Now, I have graduated high school and will be attending Rider University as a member of their honors program. And I have joined InvisiYouth Charity’s leadership program, Global Brand Leaders. I’m so excited about being a GBL-Ambassador for InvisiYouth because I want to help people and make the world a better place for everyone who lives in it, especially those with disabilities, and this gives me a platform to do that.

 

InvisiYouth Launches Fundraiser Campaign, InvisiYouth Give Back Challenge for December

November 25, 2019

InvisiYouth’s month-long fundraiser campaign, InvisiYouth Give Back Challenge, launches December 1st and has goals beyond just raising needed funds that will support our programs/events helping young adults with chronic illnesses and disabilities.

(Donate on our JustGiving Page or GoFundMe Page!

100% goes towards InvisiYouth’s 2020 programs!)

This is a fundraiser encouraging everyone to find the ways in their life they can donate back at any scale—where quantity per donor is NOT the priority. It is all about mobilizing young people and their support networks to be small pieces of a large fundraising goal and knowing with certainty each cent matters.

#IYGiveBackChallenge is the first fundraiser campaign built to be easy and stress-free…how amazing is it to be able to feel good AND do good during the holiday season without the hassle.

And the steps to give back are simple:

1. Find one part in your daily life this December and flip it into a mini fundraiser moment!

We’ve got lots of quick #IYGiveBackChallenge ideas here!

Make your coffee and donate that to InvisiYouth!

Collect your coins for December and make that a donation 

Donate in someone’s name as part of your holiday gift that keeps on giving!

Make those holiday parties and friend movie night hangouts super feel good and collect mini-donations from each person for InvisiYouth!

Just want to be awesome one day and drop a donation, that’s perfect!

More ideas on our website too!

2. Donate that amount (any amount, in any currency) to either of our fundraiser pages! (JustGiving or GoFundMe)

3. Donate Shout yourself! Use our #IYGiveBackChallenge certificate on our Instagram or download it here. Plus, we want to give you a shout out for your donation! So tag @invisiyouth!

4. We encourage everyone to get into the giving back spirit and challenge up to four people to also take the #IYGiveBackChallenge!

Friends, family, colleagues, loved ones, Instagram friends or your favorite celebs, influencers and athletes too! Anyone you can think of, challenge them, the more the merrier!

Our goals of $2,000 is so tangible if each person even donates the smallest amount they can and creates a way of donations for change!

100% of all donations in the #IYGiveBackChallenge will be used for InvisiYouth’s 2020 programs (virtual, resources, and leadership training opportunities) and events. Your money will be directly aiding young adults with chronic illnesses and disabilities that truly need our help to thrive and succeed in their lives.

When you donate to InvisiYouth Charity, you are changing a life for the better, and that’s a guarantee! So please, help us be able to continue our work supporting these deserving young people because we cannot do it without you.

Take the InvisiYouth Give Back Challenge, share it on social media, challenge your friends, family, followers and favorite celebrities to get philanthropic with you! What better way to end 2019 feeling good about yourself than knowing each cent you donate is impacting thousands of lives in the year ahead of us!

InvisiYouth Partners Up with Mighty Well for Another New York City Meetup

September 1, 2019 

Last month, InvisiYouth partnered up with our friends at Mighty Well for another meetup. This time it was in Midtown New York City at the Le Pain Quotidien Bryant ParkMighty Well is n athleisure company that makes medical accessory products designed to put strength, confidence and mobility back into the toolkit of spoonies and anyone else coping with ah health setback, so style and function are blended together.  This is our second year cohosting a meetup with Mighty Well, so perhaps this can be an annual alliance—what do you think?

InvisiEvents are unique for exactly all the reasons you can see above: they are fun, free, nontraditional, quirky, empowering, and philanthropic. Why not make hanging out with your friends and family an opportunity to also fundraise for charity?

Why not use your love of hanging out with friends and add a fundraiser element to it—so you pay it forward without having any hassle of developing an event from the ground up?

Why not host a hangout and meet an entire new community of awesome young adults while also fundraising?

Why not partner up with fellow nonprofits and businesses to bring empowerment and kickass joy to lots of young adults to multiple our outreach?

The answer to these questions is simple: InvisiEvents is going to international and we’re making our hangouts and our style of events regular throughout the year! But to do this…we need your help!

Many of you told us which cities you want InvisiYouth to come to next, and we need all your support to bring this to life! We need YOU to help be our cohosts, help us come to your cities and make the events a reality! Whether a brunch, yoga class, cooking day, movie night, sporting activity, painting class, coffee house meetup, wine tasting, or something totally different, we want to know what venues, what locations we can go to next.

If you want to help us bring these events to life, it’s simple—contact us on our website, or DM us on social media by FacebookTwitter or Instagram! We always answer and we want you to join the InvisiYouth family!

WEGO Health Awards 2019 Nominates both InvisiYouth Chat Sessions video podcast and founder Dominique Viel

July 29, 2019

InvisiYouth Charity has felt the love this summer as it was announced InvisiYouth Charity got two nominations with the 2019 WEGO Health Awards. Our video podcast series, InvisiYouth Chat Sessions, was nominated for Best in Show: Podcast, and our Founder/Executive Director, Dominique Viel, was nominated for Patient Leader Hero. WEGO Health is a company that connects millions of engaged healthcare consumers by allowing networks of leading patient advocates to work and collaborate across health conditions, disciplines, and topics.

Every year since 2011, WEGO Health has hosted their awards, a celebration of the world’s leading healthcare advocates, especially in the virtual space! And you know how much we love a good virtual activism platform—just take a look at our video podcast series, downloadable resources and advocacy campaigns! Categories range from Best Video Series and Best Team Performance, to Best Instagram, Healthcare Collaboration Patient, Advocating for One Another and Best Kept Secret.

There are over 6,000 nominees across 15 categories which go through a month of endorsements from the general public and then a judging panel help narrow it down to the short-list nominees per category. And it is from this that the ultimate winners are selected and get to go to Las Vegas, Nevada in October for the actual ceremony.

And what makes these award nominations for Dominique and InvisiYouth Chat Sessions so amazing is that a couple of our Global Brand Leaders are also nominees! Last year, Global Brand Leader-All Star Effie Koliopoulos from Chicago, IL was the winner for Rookie of the Year 2018! This year, our Global Brand Leader Mikaela Basile from Canada is nominated for Best Instagram, while our Global Brand Leader-All Star Madi Vanstone, also from Canada, is nominated for Patient Leader Hero, Best in Show: Podcast, and Advocating for Another.

To see such a strong pull of InvisiYouth Charity team members in the WEGO Health Awards is incredible because it shows how much our activism style affects the larger chronic illness and disability community to nominate all of them.

Lastly, we want to thank YOU for all the endorsements for us! To win these awards would be a dream, and it will definitely give more exposure to InvisiYouth’s programming and in return, give us opportunities for charitable sponsorships and partnerships to reach even more older youth with chronic illnesses and disabilities around the world. So what’s next? Will Dominique, our video podcast series, and our Global Brand Leaders win these WEGO Health Awards? Time will tell and we will keep you in the loop, but nonetheless, nominations are so humbling and we are honored.

InvisiEvents Returns in Full Swing to Start off 2019 in Three American Cities

January 15, 2019 

This year, the InvisiYouth Charity team decided to bring back one of its most popular (and original) programs…the InvisiEvents! These are not just the events that we support our Global Brand Leaders hosting all over the United States, Canada and now Australia. And they’re not only our FUNdraiser events either—where groups ranging in all sizes bring donations to collect at their hangouts for InvisiYouth, whether that’s a dinner party, movie night, TV premiere or hangout.  We still want more of these to happen in 2019 and beyond…but we’ll tell you about that in a bit.

It was a mission for InvisiYouth that we would provide official InvisiYouth events for FREE regularly during the year. A huge goal for us is to allow young adults with any chronic illnesses/disabilities—both physical and mental—the opportunities to build community and be more empowered in social gatherings. For InvisiYouth, these are hangouts or meetups, so the traditional formula for charity events and fundraising is out the door!

We want you and your friends (both in and out of the chronic illness community) to do things you enjoy WHILE giving back!

What we also want to do is host more of our own hangouts with you at the helm of our creativity. And a way to go one step further is to partner up with other nonprofits and businesses. We are all about community and partnership so when we can collaborate with other like-minded charities/businesses, and build an even larger network of young adults, the better we can be.

At the start of the year, we partnered up with one of our longtime nonprofit friends, Suffering the Silence. They are a 501(c)3 nonprofit organization that use artistic projects such as photography campaigns (our founder has been featured in one photoshoot campaign too!!), documentaries, galleries, story nights and retreats to share the power of listening and sharing illness stories to generate the healing force of open and honest storytelling. They hope to build awareness and reform perception and treatment of the often silences—the chronic disease community.

And since they not only work across the USA, but also have badass female founders, Allie Cashel and Erica Lupinacci, it was a perfect fit! We wanted to start the year building all that self-care and community to provide fun hangouts. And our THREE gatherings went from coast to coast, so we could connect, relax and enjoy some food and coffee!

In Hoboken, New Jersey, our founder Dominique Viel and STS cofounder Allie Cashel, hosted a fun brunch—provided by the lovely Wicked Wolf Hoboken—with great food, good views of the NYC skyline and awesome hospitality.

In the Windy City of Chicago, Illinois, our Global Brad Leader-All Star and STS Ambassador, Effie Koliopoulos, held down the fort on our super cozy coffee house hangout. And with delicious pastries provided by Beatrix Chicago and a modern atmosphere of Tri-Door Chicago hosting, who wouldn’t love it!

And last, but certainly not least, the other wonderful cofounder of STS, Erica Luppinacci, led our Los Angeles, California coffee house meetup at the chill Madison Park and Coffee with lots of conversation!

If you want to help us bring these events to life, it’s simple—contact us on our website, or DM us on social media by FacebookTwitter or Instagram! We always answer and we want you to join the InvisiYouth family!

And the Total is in! InvisiYouth’s Charity Teams for England’s Superhero Disability Triathlon Raised a Total of…

By Dominique Viel

September 8, 2017

After months of fundraising, campaigning with family and friends and online through our GoFundMe Page, InvisiYouth’s Charity Teams that participated in England’s first inclusive disability adaptive triathlon have ended their fundraisers.

We received donations online and donations in the mail and on our website’s donate page too! We are happy to announce that our Charity Teams fundraised a grand total of $1,000!

All these funds are going directly into building InvisiYouth’s new illness management tools and programs that will give back to so many teens and young adults with chronic illnesses.

These tools and programs will be unique, showing a wide older youth illness and disability community all the life hacks and tips to navigate life while living with illness, or as we call it, the non-medical side to medial experiences. 100% these donations are going to help build them!

Each of our teams competed in three sports at the Olympic Dorney Lake in Windsor, England: swimming, running and cycling.  Different teams of people with disabilities and chronic illnesses came out from across the country, along with their supporters of friends and family (and sometimes dogs too), all who worked together to complete these events.

InvisiYouth Charity loves supporting disability sports and the way adaptive athletics can play such a critical role in the life of a teen and young adult living with chronic illness and disability.

It is a way to get them back into a routine, physical therapy, and teamwork mentality. It is a powerful force that needs more attention and support group to it!

Our teams consisted of lifelong friends, and competitive athletes in university, supporting their friend with a rare disease. Another team was filled with family members and siblings.

And we even had a married couple that are passionate physiotherapists and exercise therapists who want to work with InvisiYouth to train and bring adaptive sports to more older youth across England.

One InvisiYouth Team member, 21-year-old university student Katy Baker, felt the benefits of being part of Superhero Series Triathlon.

“[The Superhero Tri] proved that people like me, with chronic illness, can take part in sports with their family and friends,” said Baker. 

Watching our teams cross the finish line at the Superhero Triathlon was unlike anything we could have experienced. So much joy and excitement from accomplishing their goal, and watching all the other youth, families, friends and supporters crossing the finish line and earning their medal.

It is clear to say that anyone can get so motivated watching such a strong group of people competing in all types of sport!

Now…InvisiYouth Charity is happy to announce that we will also be part of the next Superhero Series event, the Winter WonderWheels on December 3rd at Dorney Lake once again!  This will be a massively festive disability adaptive sporting event where anyone can cycle, walk, run, push/be pushed around Dorney Lake for different distance challenges: 1km, 5km or 10km!

AND WE NEED YOU TO JOIN OUR TEAMS!

We want to have a full set of teams so if you want to compete with friends and family FOR FREE, contact us, and we will sign you up for a fun and festive event to end 2017! 

Spotlight Story Program: Shona Cobb’s Story

Meet Shona Cobb

Breaking the stigma-ceiling for chronic illness and disability comes to second nature to British 20 year old, Shona Cobb. She’s used her experience of life with Marfan Syndrome to empower others living with disabilities and illnesses, and change the way businesses, media and society treat disability. Shona uses her successful blog and speaking on TV and radio around England to bring change to disability rights, and as an InvisiYouth Global Brand Leader, Shona’s advocacy can reach an international stage. 

‘Is there a cure?’ is a response I get time and time again when explaining my rare condition to everyone from friends to strangers in the street. Perhaps if I were diagnosed as a teenager, or even an adult, the realization that there is no cure for my condition would have been a difficult one but knowing all my life that I have a genetic condition has given me a long time to come to terms with my prognosis.

Marfan Syndrome is the name of my primary condition, the starting point for all my secondary conditions. It’s a genetic connective tissue disorder, with my Mum having passed it on to me, and it can be visible quite far back in our family tree, with 2 family members dying from associated complications during my lifetime. A daunting aspect of this multi-systemic condition.

Long limbs are one sign of the condition and my unusually long arms and legs were visible on ultrasound scans while my Mum was still pregnant with me. Officially I was diagnosed as a toddler, when I started to meet more of the criteria, but my Mum knew that I had inherited Marfan a while before that.

For most of my childhood I was a happy, energetic child. I had hypermobile joints that I would show off to my classmates and I got ‘growing pains’ a lot more than my peers. Unpleasant but not unmanageable. It was as a teenager that more serious problems started appearing. I found myself missing more and more classes to attend hospital appointments, and the reality of my condition started to sink in. It wasn’t just something I happened to have anymore, it was affecting my daily life.

I was diagnosed with Scoliosis, a curve in my spine, at 13 years old and by 15 I was unable to climb the stairs at school, finding myself doing worksheets in the library instead of joining my classmates on the top floor of the main building.

It was isolating and really affected me because I loved education and learning, I thrived at school and worked hard. So, when I was booked in to have surgery to correct the curve with titanium rods and screws I was over the moon at the prospect of some relief from the back pain. I blogged about my experience, with my Mum keeping a diary of my first week in hospital, which proved to be a good idea as I barely remember that week. I even documented my experience with a complication post-surgery and finding out that I would need a second surgery. That was the beginning of me using my experiences to educate and support others, and it was also the start of my body beginning to crumble.

By 18 I’d had one hip replaced and the other being on its way to needing the same, a difficult thing to get your head round when joint replacements are so often associated with elderly people. I really thought that after my spinal surgery, I would return to life as normal. Then after my hip replacement, I was sure that was it, I’d surely endured enough. It was downhill from there though and now, at 20 years old, I’m a powerchair user with a large cyst at the bottom of my spine being my current issue.

It’s incredible how humans adapt, after every surgery I believed it was over, I believed I could not cope with anymore but again and again I proved myself wrong. Resilient, that ‘s what people would call me. I believe though that we all deal with the hand life gives us in whatever way we can, everyone has struggles and mine happen to be health related. Others deal with grief, violence, homelessness, the list goes on. I was determined to take the hand I’d been dealt and make the best of it.

It would take me all day to list everything I’ve been involved with in the past 2 years. I’ve used my blog and social media to raise awareness of Marfan Syndrome and educate people on disability issues. I’ve talked about how environmental movements can affect and exclude disabled people on the news. I’ve been involved with a national newspaper’s project to document the daily access problems I come across as a powerchair user. For someone who was painfully shy as a child, I’ve certainly come out of my shell, and that is all down to me having a chronic illness and being disabled. I feel I’ve found my calling in life. I’m not currently able to work but I can use my free time and my voice to help raise awareness and make real change.

I’ve helped local shops install ramps to improve access for disabled people and I’ve worked with organisations to improve their inclusivity. Charity work is something I’ve passionate about though, being the Marfan ambassador for The Hypermobility Syndromes Association (HMSA) and being the youngest person in a British Heart Foundation (BHF) patient advisory group. I’ve taken what life has given and done my best with it.

People often speak about disability and chronic illness as though it’s the worst thing, but I feel empowered by disability. I am proud to be a young disabled woman, I am proud of the change I’ve made and am trying to make in this world. Being disabled and chronically ill is a huge part of my identity, why shouldn’t I be proud of that?

I hope to inspire other disabled and chronically ill people to be empowered by their conditions too, as many other disabled activists and campaigners have done for me. I scroll through my Instagram feed and I feel empowered to see so many disabled people not being ashamed of their disability and embracing their bodies.

I’ve still many rocky roads ahead of me, including major open-heart surgery and potentially more risky spinal surgery, but I still look forward, looking back at the past, at a life that could have been, has never done me any favours. I’m looking forward now, looking forward to the change I can make in the world, looking forward to being more confident and looking forward to a time where disabled and chronically ill people can feel empowered by their disability without others telling us we shouldn’t.

I’m excited to fulfill these goals and support others, especially in my new role as a Global Brand Leader for InvisiYouth!