RIP Myra ALI

Very sad news today with the passing of Myra Ali, a young woman with EB we were all privileged to meet and get to know.

 Myra was extraordinarily dignified in the face of extraordinary daily pain that blighted her entire life. Never once did we hear Myra complain about her illness and the wretched hand that had been dealt to her and her younger brother.

 Myra was all about the opportunities that were available to her and like James Dunn before her, she realised that the pain relief had its limitations and so the only way to conflict and to ever conquer her EB was by distraction. To find things that she was passionate about and take her mind off the relentless pain she endured.

 Her passion was journalism, a job which requires travelling and typing quickly to tight deadlines, but such challenges didn’t deter Myra at all and meeting Tom and our family, she seized upon an opportunity to fulfil her dream.

 Nikki has just got off the phone with Tom’s publicist in LA who had called having heard the news of her death. With bitter timing because she had just managed to include Myra on the next Marvel press junket in London. This would have thrilled Myra and she would have done a great job because she was a sensitive and intelligent interviewer and always elicited thoughtful answers. Myra didn’t want this role because she had EB and people felt sorry for her but because she was talented and worthy of the role and this she proved time and time again.

 Myra called Nikki regularly. She wanted to know if there was anything she could do to help with The Brothers Trust. Or she would call to explain that she has just interviewed such and such a ‘star’ and how much she had enjoyed doing so.

 There are all sorts of terrible diseases that afflict people, but EB makes a powerful case for being the cruellest, the most painful and the most unrelenting. And because there is currently no cure for EB, this must hurt its sufferers even further and why it is worth reiterating that Myra never moaned.

 I like to use the phrase woe bubble. It's what we all tend to lean on. ‘Woe is me’ or feeling sorry for ourselves. Nothing pricks a woe bubble quite like meeting someone like Myra. The last time I met her was at a reception at The House of Commons with football star, Graeme Souness and his brave co-hort of swimmers who had swam from England to France to raise awareness of EB and funds also. Standing for any length of time, my feet quickly tire, and I begin hopping from left to right and yet Myra stood throughout even though her feet would have had open sores, ulcers and very likely she had already had her toes removed. The reception concentrated on the possible cures for EB and the millions of dollars required. During his fund-raising endeavours, I recall the late James Dunn frequently saying ‘that it’s too late for me, but other kids born with EB will be saved and won’t have to live like me’…

 Myra knew this also. The last time she called Nikki, was with the news that her skin cancer had become terminal and with this, she wanted to discuss an initiative to help EB sufferers to create fond memories during their shortened lives. Both for themselves but also for the families caring for them, who are equally afflicted by the disease.

 This demonstrates Myra perfectly, that she was thinking of others and how to help fellow sufferers ease their pain.

 None of us count our blessings often enough. The good fortune that has visited Tom has enabled us to establish The Brothers Trust which is so kindly supported by his fans throughout the world. As well as raising money, we are keen to raise awareness of little-known charities and conditions. Our work with EB and being able to facilitate Myra Ali in her quest to become a journalist has been so rewarding for us all.

 I end by repeating the words I opened with.

 Meeting and getting to know Myra Ali has been a privilege for everyone involved with The Brothers Trust. Myra Ali’s life focusses our efforts to do as much as we can for people less fortunate than ourselves and we thank our supporters for making this possible.

Marci Fair - A Real Life Superhero!

“We can’t do everything, but we can do something and the something we do, matters”

Marci Fair, Founder and CEO of Kares 4 Kids

 Charities spend considerable energy worrying about generating their vital income, so when Marci, the founder of Kares 4 Kids received an unsolicited email five years ago from Nikki Holland of The Brothers Trust (a charity based in London looking for charities to support) she thought it was a scam and almost did not respond. Marci is used to appealing for support - not fielding emails from Trusts looking to make awards.

 “…we’re based in the United States, no one from abroad gives money to an American charity…”

 But ever diligent on behalf of Kares 4 Kids, Marci decided to reply with all of her alarms on high alert. At the time, she was frantic with organising a large fundraising event, so her reply was to thank Nikki for her email and to request that they might reconnect in a month or so time.

 Nikki replied promptly (most likely scan reading the email and getting it very wrong)…

 “That’s great. Tomorrow at 3pm is great for me!”

 Marci was initially convinced she was being scammed – but that phone call did happen and five years later, Kares 4 Kids has received an amazing $146,800 in multiple grants from The Brothers Trust, so that they can continue their extraordinary efforts working for disadvantaged kids all around the Atlanta area.

 It is important that The Brothers Trust grants reflect our supporter base. Since Tom has done so much work in Atlanta, he has a close association with the area, which is one reason why US based Kares 4 Kids is a good fit for TBT. 

 Below are some key headlines of Kares 4 Kids achievements, and then I would like to dwell on a couple of the great outcomes because they hinge on TBT's support.

 Marci explains that Kares 4 Kids works in the margins, identifying gaps of poverty and deprivation that go unnoticed. Each year, Kares 4 Kids supports thousands of children, afflicted by homelessness, food insecurity, poverty, violence and sexual exploitation as well as a raft of children with physical and mental incapacities that restrict their development and outcomes. Sometimes their support helps first and second generation immigrant families to the US, who arrive for the great American Dream, but quickly discover the reality is very different. 100% of all donations to Kares 4 Kids go directly to helping children and in the 19 years since it was founded, Kares 4 Kids has conservatively helped over 763,500 children and worked with over 603 other charities and children's organizations around the Atlanta area. 

 A brilliant example of the care and support they provide is their work with The Special Needs School. Within this school is an initiative called YALLS – "young adult learning life skills" and is a good example of a ‘gap’ identified by Kares 4 Kids. Support provision for autism is usually concentrated during the school years but quickly tails off for young adulthood (when arguably it is needed even more). 

Young adults at the special needs school called YALLS

 TBT has also loved supporting JavaJoy through Kares 4 Kids. TBT has sponsored multiple "JoyRistas" over the last couple years, to help these fine young people "of all abilities" have an opportunity for employment - giving out coffee, sharing hugs and JOY! 

Our amazing JoyRistas!

 Another amazing charity TBT has supported through Kares 4 Kids is Spectrum Autism Support Group. Recently two plays were produced with a cast of young adults with special needs. The productions of High School Musical and Mary Poppins were both such a success they drew the attention of the city authorities – both for their success but also because of the association with TBT and Tom Holland (the famous actor). Kares 4 Kids was thrilled to share the news that they are working on new shows to be staged at the Aurora Theatre in Lawrenceville, Georgia.  The Brothers Trust is delighted by this outcome. What a tremendous accomplishment for this young cast, not to mention their parents and families.

 We heard about Kares 4 Kids by chance via some local friends. Jackie and Dwight Lindo,  two doctors from Jamaica. Jackie’s sister, Claudia, lived in Atlanta and worked with Kares 4 Kids as a volunteer Ambassador and regularly extolled their virtues to anyone who would listen, including her sister in London.

 It was incredibly sad to all who knew her, that Claudia lost her battle with cancer in January 2018. When her news reached London, TBT was being formed and from our friendship with the Lindo's, we learned about Kares 4 Kids. It was the perfect opportunity for TBT to also support the community that has supported us in Atlanta. While Claudia might not be with us today, her compassionate heart continues to bless children in often desperate need, through our support of Kares 4 Kids. So much good has been done and with more to come!

A thank you video from Kares4Kids

   

JavaJoy instagram - https://www.instagram.com/java.joy/?hl=en

Spectrum Autism Group instagram - https://www.instagram.com/spectrumautismsupportgroup/

Special Needs School instagram - https://www.instagram.com/snsofgwinnett/?hl=en

 

Good News From The Lunchbowl Network

It’s always a pleasure to write a blog on the progress being made by The Lunchbowl Network, a charity working on the ground in Kibera, Kenya, the largest slum in sub-Saharan Africa.  2.8 sq kms with an estimated population of 1-1.5m, living with almost nothing, they are amongst the poorest people on earth.

 But not without hope (or smiles) as we discovered when we visited in 2018 to see our 2 40 seat buses that The Brothers Trust purchased to transport children from Kibera to and from schools and other weekend activities.

 The Brothers Trust has strict expectations of the charities it supports; namely that the outcomes of our grants are tangible and that the maximum proportion of money invested benefits good causes. This is certainly met by The Lunchbowl Network with 97p in every £ raised spent on the people in their care.

 The Lunchbowl Network’s core provision is to feed and educate the neediest children within the ranks of Kibera and this sterling work is already documented in earlier blogs and allows us to concentrate this update on their project to help deaf and disabled children.

 The Lunchbowl Network unit for the deaf was established 2.5 years ago for children with profound hearing loss and completely socially isolated as a result. There are currently 15 children enrolled, half from Kibera and the rest from other slums nearby – or as the Kenyan authorities now insist on calling them, informal settlements.

 

Enjoying a drink at the Pallet Cafe

The Lunchbowl Network employs two specialist teachers of the deaf to arm these children with Kenyan Sign Language and other communications skills so that they can integrate with society and enjoy much more fulfilling lives. As well as language, the children enjoy arts and crafts lessons and three times a year, using the Brothers Trust buses, they make visits to the Pallet Café. The Pallet Café is owned by an imaginative Kenyan businessman to create a venue for everyone but where the waiters and cooking staff are all deaf. The children love the café anyway, but it also serves as an inspiration for them to see deaf adults gainfully employed and creating a successful business.

 

Christina with her new hearing aid can now enjoy the beat. What a great dancer she is!

During our visit to Kibera, we met a young boy called Jackson who has cerebral palsy. Pregnant women in Kibera do not have access to hospitals and obstetrics we are familiar with and as such, complicated births can lead to instances of cerebral palsy. Jackson’s case is severe. He cannot stand or walk and carrying his rigid and contorted body is a task for more than one person as we all quickly discovered when we took the children to visit an elephant sanctuary.

 

Catching up this week with Sally, the founder of The Lunchbowl Network, she was able to share some exciting developments with Jackson’s development and other children like him.

 Funded by a local Kenyan Trust, we are delighted that Dorothy has joined The Lunchbowl Network team in the special needs provision. Dorothy is from the nearby town of Kikuyu, she is a qualified physiotherapist and works full time with boys like Jackson, including the holiday periods when schools are not allowed to operate.

 With Dorothy’s hard work, Jackson is a transformed child. From being confined to lying on his classroom floor in a foetal position, Jackson is now able to sit in a chair for entire lessons. His body spasms have abated so that he can now concentrate on his lessons and gain enormous strides with his learning.

 

Life in Kibera is tough. Unimaginable for you and I with our running water, fridges, heating and broadband. But life is even more unforgiving for the children of Kibera who face such physical obstacles. Slums like Kibera have too many cases for a charity like Lunchbowl to provide for. Particularly needy children are identified by the community team who also live in Kibera. The Lunchbowl Network has finite resources and capacity for limited numbers of children but the care and support they can provide is life transforming; work which TBT is proud to support and to be able to share you, our supporters. Thank you.

We Love A Good Plan

 Undoubtedly, life is complicated and perhaps there is no better demonstration of this than living in the richest country in human history and seeing a growing number of people without an even basic dwelling to live in.

 This is how the Empowerment Plan was conceived ten years ago by Veronica Scott who was studying a degree in Fine Art and was charged to design a product as part of a project.

Veronika Scott

 Having grown up with parents who had struggled and flirted with homelessness, Veronica designed a coat which could double as a sleeping bag at night. A welcome product and an idea which quickly caught on, until one day on presenting one of the coats to a homeless lady, Veronica did not hear what she might have expected.

 “I don’t wanna coat. I wanna a job.”

 This is the essence of the Empowerment Plan, based in Detroit but with a worldwide reach. The coats they manufacture are a focal point for bringing vulnerable people in to a communication exchange and with the intention to confront the plague of  generational dysfunctionality and homelessness.

The Empowerment Plan Coat/sleeping bag.

 Partnering with local shelters and hostels, the Empowerment Plan offers mainly women with children, the opportunities to receive training, paid work and much else besides.

 The 10,000 coats made each year and distributed across America and to 22 countries worldwide clearly creates a positive impact of course, but it is in Detroit that the Empowerment Plan is able to sew its greatest success stories.

 Empowerment is a good word for this charity because it emboldens women to become independent, to enjoy the power of self-esteem and set an example for their children and dependents.

 The Brothers Trust see a similar model with the John Foundation in Hyderabad, India and we are delighted to be able to support both charities.

 Detroit is a famous American city. Heralded for its car manufacturing and the birth place of Motown, but of late it is known for its social breakdown with the loss of both industries and a demise hastened by political corruption and ineptitude.

 The Empowerment Plan is well positioned to confront the enormous issues facing Detroit. There are currently 37 people going through their programme which typically last two years. The women are trained by alumni of the programme, now highly skilled machinists themselves. Veronica describes The Empowerment Plan as a stepping stone employer. By creating a structure of work for people with decent pay and good conditions, the graduates are prepped for a life beyond the shelters and by doing they break the generational cycle by setting an example of order and success for their children to emulate.

 Two thirds of their time is spent on production, making the coats which are set to save people’s lives. And the rest of their time is spent on pastoral pursuits: completing their education, receiving counselling for the traumas associated with domestic violence which is a common thread of people needing the Empowerment Plan and more general planning,  advice and support for when they are able to complete the course and move on with their life.

The Empowerment Plan Team

 The Empowerment Plan recognises that the rates of pay they can afford is often insufficient for a mum with children to put aside enough funds for all the hurdles they will encounter in finding a home to rent and in many cases to finally buy. To this end, The Empowerment Plan offers participants who have been on the programme for a qualifying period of time to apply for grants, up to a maximum of $2,500 to be used for specific purposes like down payments on a home. These grants are not loans but gifts to qualifying candidates.

 A decade on from her degree, Veronica is still in-situ as the CEO of the charity she founded. I don’t know what grade she received for her project but its legacy lives on and its value is tangible and plain for all to see.

 The Empowerment Plan creates employment in a once great American city, it provides warmth to people worldwide and the chance for mothers living in shelters to provide a better life for themselves and their children.

 What’s not to like.

Childhood Cancer Awareness Month

September is worldwide Childhood Cancer Awareness month, so it is timely to discuss and publicise the work of a charity that the Brothers Trust supports called Momentum Children’s Charity. Founded by a local hospital receptionist and some mums around a kitchen table to provide care and provision for gravely ill children and their families, Momentum is now present in 9 hospitals and their output is tangible and highly effective as you will see below in this short blog.

An Important Blog for Everyone.

Although it is very welcome that the stigma surrounding mental health appears to be reducing, it is apparent to everyone that mental health issues are rising fast, and particularly so amongst young people.

There will be many reasons to explain this rise (social media, cultural changes, family breakdown…) and while this debate rages, a charity called stem4 is busy confronting the issues that young people are contending with.

Storybook Dads

Sitting on the train, on his way home from school each day, my dad would always look up at Wormwood Scrubs, one of London’s most infamous prisons. Its high walls and foreboding front gates. He wondered about what went on inside and what the prisoners had done to end up in there. I suppose it served as an incentive for him to work hard at school?

RIP Oliver & God Bless

I only met Oliver Thomas on a few occasions. Three times perhaps over a period of about five years and yet he made such a lasting impression on me and I imagine everyone else he ever encountered. His dad, Mick is a TV director who I had worked with and known for many years. I was vaguely aware that his son, Oliver was not very well. He had a disease I had never heard of and having never met Oliver, it all rather passed me by.

 

That disease was EB, a most cruel and vicious disease and which finally took Oliver from his loving parents, Sarah and Mick and his sister Sian.  Oliver was 32, no age for an ordinary life but an extraordinary duration against the cruel odds of EB. Oliver survived much longer than his parents could have hoped for or the medics might have predicted. But his survival is bitter sweet because EB inflicts such enormous and very obvious pain and yet Mick never tired of explaining that Oliver never once complained about his lot. This is a remarkable sign of his strength and fortitude and also the love that he was enveloped in by his family.

 

It has been an altogether peculiar and often sad year. It began with lockdown and uncertainly and it is set to close in the same way. A mid-term reprieve not enough for many people to salvage what can be considered a good year. For Tom, his year ends strongly with the release of No Way Home and its reception from his legions of fans is a good reminder to Nikki and I of how fortunate we are. But during 2021 Tom was also able to complete another film and one that featured Oliver Thomas and his brave story. EBRP is an American charity with bold ambitions to cure EB by the end of this decade and why Tom was happy to front their online telethon which raised more than $2m for the cause. Sufferers like James Dunn, Freddie Fincham and now Oliver Thomas are young men who we have encountered through the Brothers Trust and witnessed first-hand their determination to help future children blighted with EB. Just like James and Freddie, Oliver lived his life as big as was possible and he did not die in vain. The clever people in white coats are inspired to defeat EB by people like Oliver.

 

For the EBRP film, Harry and I visited the Thomas home, not far from where we live. Sarah’s love and pride for Oliver was palpable and rightly so. His death is a great loss to the family even though they knew to expect it with his terminal diagnosis with a skin cancer. Oliver loved his football and he loved his life. It was an honour to have him along to our screening days with Tom and to see him at celebrity golf days that his dad had organised and how I first encountered EB.

 

He will be sorely missed by many but at least now and finally, his unrelenting pain is over.

 

God Bless Oliver Thomas.

The Launch of The Brothers Trust Hoodie to shine a light and support Children’s Cancer Awareness Month. #CCAM

There are lots of things to love about our hoodies and not just that they are warm and cosy.

We love that all the proceeds are going to Momentum Children’s Charity – a charity that helps children suffering with life-limiting conditions and supports their families in many crucial ways but also we love that our hoodies are Made in England.

You're a Star

Those emails that we all receive about another cause and yet another fundraising effort!

Well, this is one such message and we make apologies because it is really rather special and heartfelt…

Introducing Star Keeble, the 12 year big sister to Ray Keeble, who was born last July with EB, a disease that the Brothers Trust wants the world to know about so that the necessary funds can be raised so that a cure can be found.

Introducing St. Francis Center and Sister Christina

To reflect the amount of support for The Brothers Trust from North America, we have wanted to find a new charity Stateside to support. A family friend, Marlene who has long settled living in California and has an excellent track record of introductions (she introduced Dom’s sister to her husband) and she provided us with three charities which fitted our mission statement and including St. Francis Center in Fair Oaks neighbourhood, Redwood City.

Thailand - where it all started

It will come as no surprise that the Holland family has a special affinity with Thailand and particularly so for Tom and his bothers.

It is rare that a family gets to spend three months in such a beautiful place and during such a formative time in their young lives.

Visiting the numerous orphanages in Thailand, many of which were established after the 2004 tsunami (on which The Impossible is based) we became aware of Thailand’s complex social problems and we have long intended that The Brothers Trust should find a worthy organisation for us to support.

Introducing Warm Heart Worldwide