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Kevin Tyrrell Make His Mark… With His Nose!

Kevin was three months old when he was diagnosed with Athetoid (dyskinetic) cerebral palsy. Now 24 years’ old, Kevin is Making His Mark as an author.

Kevin’s CP impacts the use of his hands, and his spasms meant many of the ways other people with CP use technology didn’t work for him.

“I was introduced to a head pointer by my occupational therapist at around 10 years old, but the metal gave me a headache after a while. Then I used my nose one day and realised I was more in control and more efficient. From then on I used my nose,” shared Kevin.

Kevin loves to write, and is using his unique perspective to pen stories he hopes will inspire others.

“My goal is to become a well-known successful author and inspire others to maximize their abilities.

“An able bodied person can see the world standing while I see the world from a wheelchair so my perspective is more of a unique humbleness and to be blessed by my faith,” said Kevin.

Practically, Kevin has had to make some adjustments to ensure he can type comfortably.

“I have a Phone holder that puts my phone in an upright position so I can access my phone with my nose while in sitting in my wheelchair as opposed to sitting on the floor leaning over my phone or laptop,” Kevin added.

Kevin’s advice to others is to be open to new ideas, and to try a bit of innovation and creativity.

“Don’t be afraid to try things, sometimes it may just need to be modified and other times it just cannot happen and it’s okay to accept that. God has a purpose for all of us. There is no perfect and there is no normal. We are all special,” Kevin finished.

Kevin also shared one of his favourite bible verses.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. “ Psalm 139: 13-14.

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Matilda Mason Makes Her Mark through Mentoring

Matilda was 26 years old when she played her first game of football.

Now 28, she’s moved across the country from Western Australia (WA) to Canberra in Australia to follow her dreams of being part of the first female football team to represent Australia at the 2021 IFCPF World Cup.

Matilda, who works in IT for the National Disability Insurance Agency, is part of the Canberra United All Ability Academy, training twice a week with her developing team and has been training with Canberra United’s Under 15s team.

She was introduced to football when she was invited to a Western Australian cerebral palsy and acquired brain injury (ABI) promotion weekend in WA.

When she represented the ACT at the 2019 Australian CP National Championships – the first time female players were able to represent their states – she was coached by a woman named Kelly Striton. Matilda’s team was the first team to be led a female coach, something she is very proud and privileged to be a part of.

“Kelly has become a mentor to me, showing and driving me to do the best I can,” said Matilda.

Matilda says she’s had a number of mentors and role models who were instrumental in getting her to where she is today.

“My mentors have helped to connect me with others across the world. I think each mentor is able to provide something new to me. They know more than I do about what I’m able to achieve,” Matilda offered.

Matilda knows the value of mentoring, and has been mentoring for many years now.

“Before I was moving to Canberra, I was coaching younger kids affected by cerebral palsy and ABI. Most recently I became part of a football community within my local club Tuggeranong Football.

“Though it was a short season, I coached the under 10 girls’ team. All I wanted was them to have fun, training twice a week and playing on the weekend,” said Matilda.

She’s also had the opportunity to work closely with larger groups of young people.

“Through the all ability academy, I was invited to attend the all ability football league training sessions where I played and assisted with up to 30 kids using their strength and skills to play football at the best of their ability,” Matilda shared.

Matilda believes a mentor’s role is to provide all different types of support and guidance for the many different facets of your life. This could include career and future goals, or even encouragement to explore new and different hobbies.

She says a mentor is like a step above being a friend. Your job is to support the person to have a voice, and listen to what they want and need. Matilda also feels mentors can take steps to educate other people in the mentee’s life about their life, wants and needs.

As a mentor, Matilda’s goal is to show others that people with disabilities are capable of achieving anything they put their mind to, and that when the going gets tough, she’ll be there to catch her mentees and pick them up.

“Disabilities are disadvantages, but we have plenty of other advantages that are more important.

“Growing up, I didn’t have the internet or the knowledge available in today’s society, neither did the ones closest to me. I hope to use the experiences I have had and pass on what I did and how I coped with my disadvantages (aka disabilities) onto the next generation.

“Since playing football, this was exactly the program and inclusion I was hoping to become a part of. Providing the opportunity to be a part of something so special and important to them.

“I hope to build a network and community or family where everyone is seen and heard,” Matilda finished.

The All Ability League began on October 3 and runs until 21 November. The session run on Saturday mornings at Hawker Football Centre between 9:00am – 10:30am. The League is aimed at ages 5 to open, male and female.

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Make Your Mark: Success Story of Anila

A story by the Tauri Foundation, Bangladesh

The life of Afia Kabir Anila is full of struggle, determination and achievements. She is a volunteer of Tauri Foundation,Bangladesh currently a student of Law in North South University, a disability rights activist & motivational speaker and a recipient of “Distressed Children International’s (DCI) Young Leadership award in 2017 in the USA. She also received “Successful Person with Disabilities 2019” award handed over by the Honb’le Prime Minister of Bangladesh.

Her birth brought unfathomable joy and happiness to her parents. But soon the joy turned in to heart breaking frustration and agony when she was diagnosed with Cerebral Palsy. They felt hopeless but their indomitable love made them determined never to give up.  Because Anila is a special child, starting her early schooling was difficult as no regular school accepted her to enroll. Her parents had to visit almost every regular school in Dhaka. Even being satisfied with her interview, a renowned school regretted her. Some schools denied her admission on the ground that if she was admitted in their school, they would lose other students as some thought her disability was contagious. After repeated request one school agreed to interview her and after being satisfied with her interview, they enrolled her and that was where her real journey started. She was performing well and promoted one class to another. In one occasion when her classroom was shifted, the school authority allocated a space for her in front of the toilet door (as they had no sitting options for wheelchair-bound students). So, she had to change her school. She is so unfortunate that she didn’t get the opportunity to study in the good schools of Dhaka due to her disabilities, though her parents were able to bear the expenses.

After a couple of years of regular schooling when she became eligible to sit for O and A Level exams, she faced tremendous problems. For example, British Council provided her a scribe of different background and as a consequence she had to face difficulties in communication during her exam. So, her knowledge did not reflect in her results, though she had been working very hard. She expresses her frustration – “I attended the school regularly but I can’t write and stand.  Many times at school people can’t understand me.  I have a woman who writes for me but often she doesn’t understand and I have to spell out the words.

As a member of Global Children Panel of Save the Children UK, she talked in the Global Children Panel Members’ meeting held in London in 2011 and they accepted her proposal to work for the education of children with disabilities.

In 2012 at the age of 14 she attended an international conference on disability in Goa, India. 200 delegates from different parts of the world joined the conference and she was the youngest participant. Comments made by the organizers on her speech reads – “The person who stole the show on the third day is also the youngest delegate in the conference – 14 year old Anila from Bangladesh. Holding the audience in rapt attention for 10 minutes, this spunky girl who has cerebral palsy said in slow but intelligible English, ‘It is painful when I go to the market and people stare. I am not included in schools. I have seen my mother cry so many times due to this.’ The young age has not come into the way of her asserting her fundamental rights as she has been instrumental in bringing disability into the purview of the globally reputed organization ‘Save The Children’.

Presently along with her study of Law in a reputed university, she delivers talk on child hygiene, nutrition and importance of health care for children with disabilities in rural areas of Bangladesh. She believes that that seeing her physically the rural parents would develop a confidence that their special children can also become like her.

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Xian Horn Makes Her Mark through the Adaptive Fashion Revolution

Meet Xian Horn, a teacher, speaker, beauty advocate and Forbes blogger who is Making Her Mark through her contribution to adaptive fashion, and the self-esteem of people with disabilities all around the world.

Xian’s cerebral palsy manifests in muscle tension, muscle weakness, poor balance and coordination and dragging her left foot. She walks with adapted two ski poles for balance, which she says she occasionally dresses up to compliment an outfit, for example, black Satin for prom.

Through stories, workshops and mentoring, Xian works to contribute positively to self-esteem and the collective self-image, especially for women.

One not-so-obvious barrier to improving self-esteem is the availability of fashionable clothing that is easy to wear for people with mobility challenges.

Xian says:

“Unless you are 100% confident in every situation regardless of what’s going on around you, lack of options and accessibility definitely affects how we show up in a room. Lack of access to clothes you feel comfortable in is a subtle form of exclusion and can affect your confidence and the quality of interaction with strangers. The right clothes make you shine, help you feel your best, and are such an important part of self-expression.”

Common clothing challenges

Amongst her friends, and others in the CP community, Xian says shirts that need to be put on over the head can be a big challenge, especially for those with tension in their arms. Aside from this, she says there are some dressing challenges that many of her CP Sibs have in common.

“The consistent issues I’ve seen in the community seem to be with buttons and closures and with finding comfortable, sturdy, yet stylish non-hideous SHOES. Shoes are by far the most common issue among those of us with CP. For those like me who drag a foot you can end up with holes in your shoes in a matter of weeks… or embarrassed because the shoes you’re wearing are durable but not fit for the public—aka not fun to wear at school with friends or at a job!” says Xian.

Xian says that her whole life she’s paid attention to brands that had sturdier soles, like the Merrell branded shoes she wore in different colours for five years straight.

“Those shoes were casual and decent for business and I even wore them to weddings. But after a while, you crave something new. That’s when I discovered that I can wear a chunky heel in a nice boot for speaking engagements or a date and I feel like I’m dressed for my age,” added Xian.

A good relationship with a shoe maker has been a hack that has helped her immensely over the years to make shoes comfortable and extend their life.

“I’ve had them add rubber to strengthen the soles of my shoes before or after the sole has run through or even adjust an uncomfortable or inaccessible strap,” says Xian.

Getting involved in the field of adaptive fashion

Over the last few years, Xian has found herself a contributor to the field of adaptive fashion, beginning in 2016 working with Open Style Lab at Parsons.

In 2017 she was a model in the Cerebral Palsy Foundation’s (CPF) Design for Disability program, which saw the CPF partner with fashion designer, Derek Lam and six young designers from Parsons, Pratt and FIT to create six amazing collections of accessible outfits.

Xian says the experience was fantastic for her and the designers, as there was so much they were able to learn from each other.

“I personally got to learn from my Pratt designer Emily Ridings, about sustainable garments as she made my piece sustainable as well as accessible,” said Xian.

According to Xian, best practice in fashion design is facilitating ease of wear, considering as many unique bodies as possible, and making designs both accessible and beautiful.

“Being aware of the bodies out there and trying to design for everyone is important for looking towards the future of fashion. Also getting rid of unnecessary elements of fashion is important. Maybe your garment does not need a zipper or a button, and a sturdy magnet may improve the garment’s function and ease of access for anyone—not just those of us in the disability community or the elderly.”

Xian says that through her workshops, she found that her students with disabilities in their teens and 20s, with disabilities still have had their parent or Personal Care Attendant choose what they buy and what they put on each day their whole lives. In her classes she encouraged the girls she works with to choose their own. The ability to choose your own clothes and where possible, dress yourself, is vital, says Xian.

“Choosing what you wear is the ultimate expression of identity, independence and uniqueness.

“We deserve sexier options, professional wear, and especially in difficult times when dressing could be a form of self-care, we should be given options that help us feel at home in our bodies and our clothes whether dressing for ourselves or others,” shared Xian.

Xian’s new favourite outfit

Xian modelled in the New York Fashion Week show, Runway of Dreams in September 2020. Through a virtual format where models showed off adaptive clothes in videos from their home towns, Xian walked for Zappos Adaptive. The outfit she modelled has become one of her favourites.

“Typically, I like clothes that are flowy and a bit bohemian. So most days, I would have said [my favourite clothes are] maxi dresses, jumpsuits (purely aesthetic in this case, for my long body type, but still often inaccessible so I need help getting out of them) or tunics, but since walking in NY fashion week in Sept, my new favourite outfit is the professional wear Zappos sent me. This includes the amazing MagnaClick white business “button down” shirt with magnets instead of buttons. I also love my Tommy Hilfiger adaptive Seven7 jeans. For flawless design and beauty, these two NYFW pieces really impress me. The jeans really fit like they were made for me and flattered my behind #ThanksZappos #ThanksTommy!”

She adds:

“It gives me hope for the future of fashion especially making clothes not just for kids with disabilities, but for adults who long to present their best self at home, and at work, or on a date, and celebrate their bodies as they live full fulfilling lives of greater purpose,”  Xian concluded.

For adaptive clothing and footwear options, visit the links below:

To see more about Xian, follow her on:

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Maxim Kiselev Makes His Mark Through Dance

Twenty-nine year old Maxim Kiselev lives in in Moscow, Russia, with his beautiful fiancé, Natalia, and lives with spastic tetraplegia which mainly affects the left side of his body. Maxim is a wheelchair dancer, and does both ballroom style dancing and figure skating on ice.

He initially took up dancing at 14 years’ old as a way to try to strengthen his left side – in particular his left arm and fingers which had limited functionality at the time.

“In the beginning I was simply excited at the thought of doing something new that doctors thought could improve my quality of life,” Maxim said.

His plan was to be the standing partner of a person using a wheelchair, however his challenges with coordination and balance meant this wasn’t an easy feat, and he eventually realised that it wasn’t going to be possible.

“When my mother and coach suggested I get into a wheelchair myself, as the severity of my disability allowed me to do that, I was furious.

“I worked so hard through the years to be able to walk! Getting into a wheelchair felt like a setback. But they insisted and managed to convince me. I got into a wheelchair and was quickly pleased by my progress,” Maxim continued.

After two years of wheelchair dancing, Maxim attended a paradancing show, which featured really talented professional dancers.

“At the show I realised that there was a whole new level I could get on.

“My mother found a ballroom latin dance club and they had a coach who was willing to work with me, although he had no experience with people with disabilities in a wheelchair,” Maxim said.

A month later, Maxim was thrust into competing in the Eurasia Cup 2007. This was his first tournament, and he was a complete newbie, but he managed to place fourth in the solo category.

The possibilities without a partner are pretty limited, so Maxim went on in search of a dance partner. With only a few weeks practice under his belt with his first partner, the pair took part in their first tournament—the Open Belarus Championship 2007, where they were Vice Champions, which Maxim says was “surprising and encouraging.”

Finding a partner

While his start in partner dancing was good, he says finding the right partner (or any partner!) wasn’t easy, and he faced a lot of discrimination along the way.

“My mother would get in touch with the girls’ parents or coaches and the vast majority had a very rude reaction as soon as they found out I was disabled. Nowadays the attitude towards disabled people in Russia started to change slowly, but back then it was pretty bad.

“The people my mother contacted didn’t even want to know what the deal was, they just refused to have anything to do with disability. Some other people (about 10%) were more open minded and polite, but they had a hard time figuring out what wheelchair dancing was and how a person in a wheelchair could dance,” shared Maxim.

Most of the time, Maxim’s partners would be noticed for their talent during competitions and would move on to a partner who didn’t have a disability. In the course of ten years, Maxim says he had about 14 different partners.

Check out Maxim in Virtual Reality!

Learning from coaches

His coaches really drove him to grow and develop as a dancer, and even without experience, came up with some great techniques to help him manoeuvre the chair more easily.

“In the beginning we were building the choreography around the standing dancer and my part was choreographed subsequently to make me fit in with the wheelchair. With time we really managed to adapt choreographies originally designed for two standing dancers and incorporate a great number of traditional elements of Latin dance,” said Maxim.

His dancing was elevated even further when his third coach forced him to think like a standing dancer. Maxim says this is what helped his performance to look like dancing rather than just rolling back and forth on the dance floor.

“He taught me how to do more than simply execute dance moves, he taught me to feel the music and the dancing,” Maxim said.

Not without its challenges

While Maxim’s dance skills grew to be exceptional, partner dancing with one standing and one seated dancer could be quite tricky!

Maxim said:

“The most difficult part was the closeness. The key aspect of dancing is that the two partners are very close to each other. This must be the same in wheelchair dancing. The standing partner must stand really close to the wheelchair… which means that any wrong movement with the wheelchair could cause a foot or toe injury for her!

“We had to go very slowly until the movement was perfectly assimilated and performed without staring at my partner’s feet!”

Dancing with CP

Maxim says one of the biggest challenges he faces is the fact that his left side is significantly weaker than his right. His left arm tends to repeat the movements that his right arm does, which can be a big problem when he’s trying to do asymmetrical movements or lead his partner.

“It can disrupt the rhythm of the dance and instead of feeling guided, my partner might get confronted with a counter-current momentum,” said Maxim.

Maxim also has to work with the lack of sensitivity in his left arm.

“When I have to move it while staring in the opposite direction, I don’t exactly know what it is doing. Managing this requires tremendous effort, and because of the lack of sensitivity, I also often hurt my fingers in the wheel,” said Maxim.

After 10+ years of dancing, Maxim says that making the same movements on both sides (rolling shoulders, turning etc.) with the same amplitude and speed is a challenge. This, he says is something he and his coach have managed to work around, and now, these weaknesses have been turned into strengths.

It also helps when his partners have more body strength than average dancers as sometimes they need to help Maxim stop the wheelchair, or pull it while remaining pretty and gracious.

Proudest moments

Maxim says his greatest pride is having taken his dancing skills on ice. He is the first high level figure skater in a wheelchair, and still the only one to this day.

What’s next for Maxim?

Maxim is taking a break from dance at the moment because of health issues, but is filling his time with other exciting projects.

He recently participated in a Russian Virtual Reality Project—VRability—which aims to motivate people with disabilities to get more active in real life. You can read about Maxim here.

He’s also working on a wheelchair that will be lighter, more technologically advanced, and easier to handle than any other chair that he has used. He has a concept, and is looking for funding to build his first prototype!


You can follow Maxim and his fiancé, Natalia on Instagram – @nagrimakis

 

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Layne Dixon’s Journey Through Sport

In 2014 I was a part of a research program at the Ability Centre (was known before as the Cerebral Palsy Centre) to see how running could change someone with CP (cerebral palsy). This was a 10-week program at the centre filled with running drills and gym equipment that we as the participants used. After the first couple of weeks my parents could see a massive difference in me, not only with my walking and my speech, but also my schoolwork improved, I was less tired during the day, I was happier and so much many more things started improving. As a result of me being more active and through running.

After those first ten weeks, we signed up to do another program with them, but this time the physios weren’t pushing me and the others hard enough to achieve the same result. In August of 2016 my mother and I reached out to Rebound WA, and they gave me a para running coach to contact, Mark. I did a couple of running training sessions with him and his athletics, but not long after that Mum and I both knew that I wasn’t good at running.

Mark asked me to get a classification, so I could compete on the track. A classification is a number which summarize your disability, everyone with the same classification has similar disabilities then you, e.g. I’m a T36 and everyone else that is a T36 runs similar to me. During my classification one of the classifiers asked me if I wanted to do something else as well as running and I said, “I don’t know”. The classifiers took mum and I to the shed, on the other side of the building in the athletics track, I sat down on a seated throws frame, and ever since then I knew it was for me.

Not long after that we got in touch with my first throws coach, Phil. He got me to throw a shot put standing up and then he got one of his athletes frames out to get me to throw in it. As soon as I did my first throw in the frame, Phil said, “I can get you to the Paralympics, I think you will be good at it.” And then six months later I competed in my first Junior National Championships at 16 years old, I represented Western Australia in the women’s mix para (seated throws and standing throws) under 20 shot put. Ever since then I became the under 18 and under 20 Australian record for F33 – seated throws: shot put, discus and javelin.

Athletics – classifications

Para-sport is very similar to able-bodied sport, but the only difference is; it is adapted, modified and possibly change to suit disabled people’s needs. Para-athletics is no different.

For most para sports each athlete has to have a classification, which is a number that represents your disability. I’m going to give athletics for an example – T/F21 classification is suited for everyone that has down syndrome, some of you may not know this as this is the newest classification in athletics. If you are competing against other para-athletes and from other classifications. Once your event has finished an official will take it away to get marked, and whoever wins has the highest percentage. This percentage is out of the world record. I don’t know about other sports, but for athletics, this is done this way to give para-athletes a fair advantage.

Para-athletics has one of the biggest classification systems there is. There are more than 30 classes, and these are based on your disabilities. e.g. cerebral palsy T/F32-38. The T means track, and F means field. At world competitions, you will only see one of them e.g. F33 and this means that there is an event on the field. Click here for more information on each classification there is for para-athletics.

Getting into para-sport

From my own experience with getting into athletics, I believe that there needs to be a change, to make para-sport more accessible to the disability community; and that change is now. There are so many sporting organisations out there that are designed for disabled people, and they are trying their best to expose disabled people to para-sports. Some of these organisations include; Rebound WA, Wheelchair Sports NSW and Sporting Wheelies and Disabled Association. These are just some of the para-sporting organisations throughout Australia. You can find the full list of them here.

Late last year the Australian Paralympic Committee setup a new program, The Paralympic Education Program. This is designed to educate our younger generation, primary and high school students about disability sports. They did this previously with the lead up to the London 2012 Paralympic Games, which was a huge success, so they have been running this program again in the lead up to the Tokyo 2020 (now 2021) Paralympic Games. Australian Paralympians go to schools across the country to educate the students in these schools about para-sport, as well as exposing them to disability. For more information on this please click here.

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The pop-up centre getting kids with CP moving!

Families are travelling as far as five-hours on a round trip to bring their kids with CP to Gympanzees’ all-inclusive pop-up leisure centre.

You might wonder why anyone would travel that far to go to a gym. For these families and their often-isolated children, the wonderful results being seen by this first-of-its-kind program make it a no-brainer.

Reportedly, 84 per cent of UK families with a child with a disability can’t access regular leisure activities. That sort of inactivity then has a knock-on effect for that child’s physical and mental health.

It’s not only the child that is impacted -this kind of societal isolation has an enormous impact on families. Reports suggest that 72 per cent of parents in this situation also experience mental health challenges related to the isolation.

Enter Stephanie Wheen-Gympanzees’ Founder and CEO, and Physiotherapist for children with cerebral palsy.

In 2016, Stephanie began extensive market research and early planning on how to overcome this issue, specifically in the Bristol area.

It was the tipping point for many lives to be uplifted by what was to come.

The project

All that market research led Stephanie to create Gympanzees, a fully inclusive leisure facility which would cater for people from 0 – 25 years of age with any ability.

The centres have many different types of rooms that each offer a unique way of getting active and having a sensory experience, including:

  • Sensory rooms
  • Music rooms
  • Indoor and outdoor playgrounds
  • Space for soft play
  • Trampolines
  • A gym
  • Therapy rooms
  • Studios for classes such as yoga
Her vision was about creating a safe space for people with disabilities to become fully engaged in play-motivated exercise. She also wanted families to have the support of being able to interact with one another.

“The major goal of Gympanzees is to encourage fitness in young people through play, using highly trained staff who can engage with each visitor using specialised equipment,” says Stephanie.

So, with all that in mind, she pitched her idea for Gympanzees to the Natwest Accelerator program and incorporated as a social enterprise in 2017.

The newly formed social enterprise went on to make plans for building the first permanent Gympanzees facility, but it became quickly apparent that this would not be a fast process.

Not wanting to lose momentum on addressing the need, Gympanzees became a pop-up exercise.

The first four-week Gympanzees pop-up was held at a special school during the UK Summer of 2018, supported by more than 80 volunteers and members of staff.

Every day, close to 56 children came through the pop-up gym.

The following Easter, Gympanzees held their second pop-up which saw tremendous growth with close to 80 children coming through the daily.

“We’re running pop-ups in school holidays because we know that’s a time when the families of children with disabilities feel isolated,” says Stephanie.

Alongside the pop-up gyms, Gympanzees has also grown a thriving online community, with social media being used to make sure people know when and where all the action is taking place. It’s also creating a place for families to communicate outside of the pop-up events.

The results

To-date, more than 527 people with CP have visited one of Gympanzees’ three pop-ups, and more than 3930 people have visited in total.

“Our research tells us that 98 per cent of those people loved their experience and would come again,” says Stephanie.

“Every parent tells us we offer unique facilities for them and their child that can’t be found elsewhere,” she says.

Approximately one in five visitors to a Gympanzees pop-up will travel for over two-hours for the experience.

“Several of our visitors spend close to a five-hour round trip just for one session,” says Stephanie.

“This tells me how desperate the need is for our service.”

To evidence the need and the results, three interns from the University of Bristol have joined with Stephanie purely to conduct research on the Gympanzees facilities and the impact it’s having on those it’s intended to help.

A subsequent report has been produced by the interns which lends great credence to the achievements of Gympanzees.

The report incorporates a substantial element of feedback on experiences had by those attending the pop-ups and has become a central feature of how Stephanie and the Gympanzees crew continue to evolve what they do.

“Our visitors have experienced countless health benefits, including drastic improvements to sleep patterns, new strengths, confidence in walking and in their other gross motor skills,” Stephanie explains.

Among the success stories coming from the early days of Gympanzees is that of a six year old who managed to take five steps on her own using her frame. Prior to this, her mum would move her legs for her, so this shows the scale of the progress made at the pop-up.

Another six year old boy learnt to hold his head up for the first time and was able to do so for a full 10-minutes.

“A particularly special moment for Gympanzees was with a man living with CP who joined his 3-year old son on a trampoline for the first time with the aid of hoists,” says Stephanie.

“The son had no disability and so this showed us the effect on the quality of life for our beneficiaries. It’s so obvious in the smiles and the strengths we see develop in our facilities.

“Particularly special was seeing a three year old boy laugh for the first time while using our equipment with his mum. She said it was the best moment in the last three years of her life.

“Our ethos and focus is on fun,” says Stephanie who shares the quote below which came from one parent that she feels tells the whole story:

“There is a difference between your child being tolerated and celebrated, and here it is so clear they are celebrated.”

It’s not just the people who use the gym facilities at Gympanzees that are benefiting from this initiative either.

The well-run café that supports the Gympanzees pop-ups is staffed by a volunteer adult with CP and his carer.

“It’s another great testament to our inclusivity, demonstrating how people with disabilities are central to the delivery of our project,” Stephanie shares.

Future plans

Right now, Stephanie is most focused on proving that the Gympanzees pop-ups can generate the minimum number of attendees each month to deliver financial sustainability for a permanent bricks and mortar facility.

“Each of our pop-ups grows incrementally, requiring more rooms and equipment, larger rooms and longer hours,” she says.

“We are planning to continue our pop-ups and building our supporter base, business model and offering the much-needed services.”

The hope is to secure funding and land for a permanent Gympanzees leisure centre to be built by 2022, with a long-term vision to open 13 such centres across the UK.

“On weekdays the facility will be used for regular play as well as therapy sessions, and on weekends, the studios will be available for birthday parties or other celebrations,” says Stephanie.

“It will be a social space for people to meet up, get to know and support each other.”

An online shop is also in planning so parents can purchase the equipment their children are using at Gympanzees and enjoy continuing development at home.

Stephanie has already been approached by other therapy centres and interested parties from across the UK who are interested in the Gympanzees model. This has led to investigations around the possibility of franchising the pop-ups with the aim of testing the concept in areas outside Bristol before building further bricks and mortar centres.

Gympanzees won the Major Award for Quality of Life in the 2019 World Cerebral Palsy Day Awards.

To learn more, visit gympanzees.org

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Bring home the importance of sleep, nutrition and movement for CP families

Dr Olaf Verschuren has been working with the Centre of Excellence for Rehabilitation Medicine, the UMCUtrecht Brain Centre, Utrecht University and De Hoogstraat Rehabilitation in the Netherlands for over a year to tackle the challenge of poor sleep, nutrition and physical activity in children with CP.

The doctor and his colleagues started by interviewing the parents of 15 children living with CP.

The clinicians wanted to know what concerns existed around making sure their children received proper sleep and nutrition, and that they were getting enough daily movement.

It quickly became clear to the project group that parents struggled in all three of the key areas being addressed. They worried about doing too much, as much as they worried about doing too little.

Also clear from the interviews, was the absence of evidence-based resources that could effectively support the families through this specific challenge.

The project team were well aware of the strong correlation between long-term health quality and sleep, nutrition and physical activity.

Obviously, it’s not practical or cost effective for families to bringing their children to see clinicians every day. So, how can parents give their children the highest possible quality of care in their homes?

Collaborating with parents

Dr Verschuren and his colleagues began collaborating with parents to develop online resources that would be useful in day-to-day family practice.

Alongside parents, the project group started identifying relevant sub-themes of sleep, nutrition and physical activity.

The collaboration was effective. A care-path was formed that followed three steps:

  1. Screening children with CP in the 0 – 8 years age group
  2. Identifying children with, or at risk of, problems with sleep, nutrition, and/or physical activity
  3. Providing care and support for these children and their families, starting with the resource development.

Bringing home the resources

In June 2019, the project published a series of resources to the CP-Nederland website (a patient focused website from the organisation previously known as BOSK) to address each of the three related health areas.

The resources are presented in a variety of easy to understand formats including infographics, videos, posters, cards and text.

In the first two months alone, the new web pages had been visited more than 1000 times and the infographics were downloaded more than 400 times.

Anecdotal outcomes

Most of the feedback received by the project team is around sleep.

“Screening for sleep opened the eyes of many parents,” says Dr Verschuren.

“But also, the physicians did not realise that sleep affected so many children and their parents.”

From the 80 parents the team have screened in the past six months, more than 75 per cent indicated one or more sleep problems.

Most parents have reported feeling that the website provided plenty of information on all the three areas covered by the project.

“There have been many suggestions that a great addition to the website would be a child-friendly resource as well,” says Dr Verschuren.

“We’re hoping to find funding to work on that in the near future,” he says.

Parents have also expressed their appreciation for all the information on the website being based on evidence that it is clearly organised and on a website they trust.

Future plans

Dr Verschuren says that being involved in a rehabilitation program is like being a professional athlete.

“For professional athletes, physical activity and exercise training programs are just part of their formula for success,” he says.

“Elite athletes know the importance of nutrition and sleep as ADDITIONAL key factors in sporting success.

“Physical activity, sleep and nutrition are considered the three main components that allow an individual’s body to achieve its goals related to activities in daily life.

“That’s why we need to pay attention to them and to optimise them for the maximum outcome we (the child, parents and clinicians) are aiming for,” he says.

While the website has filled a void for families in The Netherlands, Dr Verschuren and his colleagues know that easy to access information is not going to be enough on its own to transform the lives of children with CP.

They have their investigations set firmly on understanding:

  • how parents perceive the use, utility, usefulness and impact of the online resources
  • what more they need to enable them to integrate that knowledge into their lives and
  • how to empower them to support the long-term health of their child with respect to sleep, nutrition and physical activity.

In the meantime, the group are translating their resources into English to make them more accessible across the World.

This project was funded by the Innovation Fund from Health Insurance Companies in The Netherlands. 

To see the full suite of resources, visit the CP Nederland website.

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Meet Katy Fetters, World CP Day Ambassador and Founder of CPstrong

From its very first year in 2012, World CP Day has existed to celebrate people with Cerebral Palsy and those who are committed to improving the lives of people with CP. Katy Fetters ticks both of those boxes, and that’s why she’s our newest World Cerebral Palsy Day Ambassador.  

Katy has been working on building connections in the CP community since she was a teenager, when she launched a blog for teens with CP. As a young adult, having outgrown her teen blog, Katy started CPstrong, a blog and network that celebrates people with Cerebral Palsy, and gives them a space to connect.

About Katy

Katy lives in Boulder, Colorado and has recently completed a Master of Arts in Media & Public Engagement. She’s now working as a Strategist at Crispin Porter Bogusky, an advertising agency.  

Fetters is an identical twin, and was born at just 27 weeks weighing only two pounds. While her sister, Sara looked to be free from health concerns, their parents were told Katy had a severe brain bleed and would never walk or talk.

“My dad is a bodybuilder and my mom is quite nutrition conscious, so I was always encouraged to be active. I played soccer growing up, and I’m still really active at the gym and outdoors.

“A couple of years ago I camped and hiked my way through South America with my boyfriend and while we were in Peru, hiked Machu Picchu, which was incredible! I love being outdoors and challenging myself,” Katy shared.

Katy wears a device called the ExoSym, which she says has been life changing.

“The ExoSym is a custom-built brace designed by Hanger Clinic, and while it might not be suitable for everyone, it has made a huge difference to almost every part of my life.

“From the moment I put it on I could tell it was unlike any AFO or brace that I’ve ever worn. It was actually comfortable— on the first day!

“It might not have gifted me the athleticism I’ve longed for, but I can say with complete certainty that I wouldn’t have the confidence to go out into the world like I have been in the last couple of years without it,” Katy said.

Katy Fetters Hiking

So how did the concept for CPstrong come about?

“For those of us with CP, we grew up with it and will grow old with it. There is no ‘getting over’ a lifelong disability. Instead, we need to learn how to live with Cerebral Palsy despite the challenges it presents in our daily lives.

“CPstrong is where we can narrate those experiences – how CP is with us through the best and worst of life’s moments.

“I think #CPstrong is about forming collective identity; finding solidarity in our struggles, and experiencing a sense of belonging in the spaces we create. We may find strength on our own but my hope is that we feel less alone because of the strength exhibited in this community,” said Katy.

What about the CP Social?

“I knew that there was a vast desire among young people with CP to ‘meet’ others, connect, relate and share information, so while I was undertaking my thesis project I came up with the idea to hold a get-together for young adults with Cerebral Palsy.

“We hosted an informal panel of speakers to discuss relevant topics and hold Q & A sessions. It was an amazing success and now I’m working on organising our next CP Social in 2020,” Katy added.

About being a World Cerebral Palsy Day Ambassador

“I’m honoured to be a World CP Day ambassador for 2019.

“One of this year’s campaign themes is #MoveAsOne and is all about everyone getting outside and collectively getting active at 1pm (wherever you are) on October 6. I am so passionate about the benefits of both being active and connecting with your community, so this aligns so well with me.

“A lot of people with CP struggle with exercise, physical activity and sport, and I can absolutely relate! I’ve always been active, but it has never been easy. I know what those barriers look like, and that’s why I want people to know that it is possible, and it can be something that you really enjoy,” Katy shared. 

What’s next for Katy and CPstrong?

“While I am still exploring ways in which we can grow, I envision CPstrong as a collectively owned organization that works to build community and make connections with others who have CP—like many of us who subscribe to our hashtag. I sense a huge need for people in our global community to meet so that’s why we will continue to work toward hosting annual CP Social events. Wouldn’t it be amazing to host multiple, all at once, in different parts of our world? Look out for more information on our next CP Social in March, 2020!”

 

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A sporting life for all

What is CPISRA?

The Cerebral Palsy International Sports and Recreation Association (CPISRA) was formed in 1969 and is the leading international sports organisation governing and promoting sport and recreation for Cerebral Palsy (CP) and related neurological conditions.

CPISRA’s vision is that “all people who have CP or related neurological conditions have the opportunity to benefit from and participate in sport and recreation throughout the World”. CPISRA aims to provide and promote opportunities for recreational sport and activity, the development of grassroots adaptive sport, and platforms for regional and international competitive and elite sport. CPISRA is a founding organisation of the Paralympics and one of only four International Organisations of Sport for the Disabled (IOSD) recognised by the International Paralympic Committee (IPC) to represent impairment groups.

CPISRA has been responsible for the development of new and adaptive recreation and sports, including Boccia, CP Football, RaceRunning and Wheelchair Slalom. In August this year, Sant Cugat in Spain welcomed 600 participants from 30 countries to the 2018 CPISRA World Games. In the 40 year history of the World Games, this year provided the broadest schedule to date, showcasing world class competition in para-athletics, para-swimming and under-19 CP Football, as well as development sports Camps and Competition for Boccia, Wheelchair Slalom and Female CP Football.

How can sport impact Quality of Life?

A recent review of the evidence on outcomes of sport and activity carried out by Sport England concluded that participation in sport positively impacts physical and mental wellbeing as well as individual personal development. Physical wellbeing outcomes include improvements in strength and health, as well as therapeutic benefits, impact on children’s development and behaviour, improved quality of sleep and increased energy levels. Studies also reported that participation in sport can increase general ‘life satisfaction’, by providing opportunity for enjoyment and happiness and reducing symptoms of anxiety and stress, as well as increasing social interaction, confidence and self-esteem. Participation in recreational sport develops and maintains physical and mental wellbeing, and promotes good health by maintaining a healthy lifestyle.

“I believe that recreational fitness has played a fundamental part in my lifestyle, giving me independence and challenging preconceptions along the way. One of my favourite passions has been my outdoor pursuits, and the undertaking of these challenges has helped me maintain a physical and healthy lifestyle.” – Julie McElroy, Ataxic Hemiplegia, Head of Recreation CPISRA

“Sport is an important part of my life. It is not just about the competing or training, but sport also encourages me to maintain good physical and mental health. It is also the social and active part of sport which helps me to characterise my everyday life” – Graham Condie, Hypertonia, Research Officer CPISRA

With all of this in mind, CPISRA is passionate about promoting sport for recreation, wellbeing and enjoyment, as well as sport development and competition. Recreational sport can take many forms and at its simplest is defined as taking part in an activity that you enjoy in your spare time. Engagement in recreational sport can be participating in a sport itself, volunteering with sport or spectating sport in your community. Participation in recreational sport increases physical fitness, improves psychological wellbeing, provides social benefits for individuals and communities, and is FUN.

2019 International Outdoor Recreation Camp

In autumn 2019, CPISRA is hosting its first international outdoor recreation camp in the Lake District, UK. The camp will be held at the Calvert Trust and their facilities are accessible to all ages and levels of physical disability, including those for whom many outdoor facilities are not accessible. The Calvert Trust Lake District is a purpose build facility where guests can enjoy the benefits of outdoor activities in a safe and accessible, yet challenging environment and they have a firm ethos of “it’s what you can do that counts”.

Activities at the CPISRA outdoor recreation camp will include canoeing, rock climbing, wheelchair abseiling, orienteering, horse riding, and much more, with a focus on personal development, team building and the breaking of boundaries. Trying something new and achieving a challenging activity in a supportive environment can give a huge boost to the sense of wellbeing which can provide benefit long after the camp is over. The camp is open to individuals all over the world, and interested parties should contact lauren.milstead@cpisra.org.

More information

For more information on CPISRA, visit the website at www.cpisra.org, find us on Facebook or Twitter.

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