Article: Louis Tomlinson lends his autograph for the fight against childhood cancer

Article: Louis Tomlinson lends his autograph for the fight against childhood cancer

IMG_0528August 15th, 2017: Louis Tomlinson, along with other celebrities, is supporting GuitarTown Kids, a project produced by The T.J. Martell Foundation to help raise funds to fight childhood cancer. The T.J. Martell Foundation was founded by Tony Martell, who was a music executive for over 30 years (before his passing in November of 2016), after losing his son to leukemia in 1975 when he was only 19 years old. Two years prior to his son’s passing Tony had promised his son T.J. that he would raise 1 million dollars to fund cancer research so that nobody else would have to go through the same thing his son was going through.

IMG_0529Soon after his son’ death Tony Martell joined forces with friends in the music industry legends like Ella Fitzgerald, Benny Goodman, and Duke Ellington to organize the very first fundraiser which took place in a nightclub in New York City. That night they raised $50,000 and the T.J. Martell Foundation was born. Through the years, the foundation has raised over $280 million dollars for cancer research which has been matched many folds by funds from other larger sources for a total of several billion dollars. The funds raised by the T.J. Martell Foundation support innovative and cutting edge research in finding treatment and cures for cancer. Among the universities and centers supported by the T.J. Martell Foundation are the prestigious MD Anderson Cancer Center, Vanderbilt University, Columbia University, and Emory.

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For the GuitarTown Kids project over 30 guitars, donated by Gibson, were painted by visual artists that interpreted ideas from the musicians and celebrities that then autographed them. The guitars will go on display in Los Angeles where they will be auctioned off at an event later this year.  Funds raised through this auction will then go to benefit cancer research at the Los Angeles Children hospital.

You can support the T.J. Martell Foundation by direct donation, by participating to auctions, and by volunteering. Learn more about how you can help by visiting their webpage.

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Article: Heads Together

Article: Heads Together

August 2nd, 2017: Heads Together is a campaign launched by the Duke and Duchess of Cambridge and by Prince Harry to end the stigma attached to mental health. While doing their charitable work with veterans, the homeless and people from all walks of life facing life challenges, William, Catherine and Harry realized that often the common denominator is mental illness.

Unfortunately, while physical illness is openly discussed and people get treatment for it, mental illness has so much stigma attached to it that it prevents people from seeking treatment. What Heads Together hopes to do is to encourage an open discussion on mental health so that people become more comfortable seeking help and support. The Duke and Duchess of Cambridge and Prince Harry believe that the conversation on mental health can start small and simply with a family member, a friend, or a colleague. If this first step is taken, people will realize that they are not alone and that everybody faces mental health challenges at different stages of their lives. Prince Harry himself recalls the challenges of losing his mother at age 12 and wishes he had talked earlier with other people about his struggles.

About_usOn their website, Heads Together has posted several videos illustrating how this conversation on mental health can start by simply opening up to another person. The “conversation films” called #oktosay or #thereforme, show spouses, friends, mother and daughter pairs, and even acquaintances sharing a time when they began a conversation on mental health and how they have supported each other through the process of talking about their challenges of facing everyday life. These “conversation films” are powerful in that they show how sharing mental health struggles can begin the healing process. One of these videos is a Skype call between Prince William and Lady Gaga. Lady Gaga, having recently made public her struggle with depression, shares how the process of beginning to talk about her challenges has had a powerful positive impact on her life.

Heads Together has partnered with charities that have distinguished themselves for their work to raise awareness on mental health and to support individuals and families facing mental health challenges. Here are the charities partners:

C8uflCEXoAAdoOTPrince Harry hosted a BBQ in July of last year bringing together sport personalities to promote the campaign Heads Together. The idea behind this event was to show that even successful people like top athletes struggle with mental health issues. At the event was also former player of the England and Manchester United Rio Ferdinand who lost his wife Rebecca to breast cancer last year and recently lost his mother as well to the same disease. Rio Ferdinand commented that some of the struggles Prince Harry had gone through after losing his mother, his own children were facing while moving forward.

Heads Together was the ocharity of the year at the 2017 London Marathon (our article here). The event helped bring awareness to the Heads Together campaign and has helped open up the conversation about mental health in the UK. Runners of the Heads Together team were encouraged to share on videos personal stories on how reaching out to others has helped them begin to face their mental health struggles.

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While reaching out to a family member or a friend is ideal, sometimes people with mental health struggles can still feel alone.  On their website Heads Together lists a series of resources to get immediate help. They can be found at this link.

Pictures credited to Heads Together.

 

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Article: Yorkshire Children’s Trust

Article: Yorkshire Children’s Trust

July 29, 2017: imageThe Yorkshire Children’s Trust is a charity in the UK which provides support to families in the Yorkshire area with seriously ill children. The Trust was created in 2011 by Simon and Dawn Widdop, parents to (now, leukemia-survivor),  Leigh Anne Widdop and her aunt, Sarah Thompson.

During Leigh-Anne’s long and very difficult battle with leukemia at the Children’s Cancer Centre in Leeds, her parents met other families experiencing some of the same fears and frustrations as they were; especially when trying to provide the costly medical needs for their sick children.  5 year-old Leigh-Anne had a particularly difficult time with the aggressive cancer, (below with her mum and dad. Photo, courtesy of Yorkshire Children’s Trust.)

 

 

To help her body cope after the many routines of treatment and the toll it was taking on her body, she was placed in an induced coma so that her body could rest. Upon her awakening, the doctors determined that Leigh-Anne would need a bone marrow treatment to increase her odds of survival, which she received through the use of stem cell donation. This meant another long 4-6 weeks stay; this time in a sterilized  “clean room” because her immune system was depleted with the transplant. It was wonderful news that Leigh-Anne was able to beat the odds and near year’s end, on Christmas Eve, she was able to go home.

 

 

While Leigh-Anne’s survival was victorious,  the result of her ordeal left her with epilepsy and learning difficulties. Unfortunately, there are far too many children facing ordeals similar to Leigh-Anne’s, but far too few to survive it. Battling diseases such as leukemia, neuroblastoma, and other childhood cancers also takes a toll on families-mentally, physically, and financially.

Due to their experience with this first hand, the creators and their team at Yorkshire Children’s Trust made it their mission to lessen whatever burden it could on families of seriously ill children. One big burden is the cost and availability of certain medications and treatment therapy. This adds a great deal of financial strain on an already stressful situation for a family and often beyond what a family can provide. This is most especially true in the UK where many of the additional trial treatments for their child may require traveling abroad to get it.

imageOperating solely through gifts and donations from local fundraisers, The Yorkshire Children’s Trust began small. The Trust first began by helping local children in its origin area of Halifax get provisions such as medical equipment, transportation, lodging, or home and transport modifications.  In just a few short years of operation the Yorkshire Children’s Trust grew financially allowing it to help serve poorly children in all four of the Yorkshire regions. It has continued to serve all of these regions over the years through the generosity of donors and hard working fundraisers; many of them young students at the local schools and citizens within the community it serves.

In 2017 the charity has begun adding another layer of support by addressing the imageemotional drain that many families experience so to help, they offer “mid-week breaks” throughout the year. This break will not be just for the poorly child, but also for mum, dad and any siblings too; individual breaks and as a family. Some of these breaks include small getaways and short mini-trips from the hospital- even if for just a few hours break. A mid-week break might also be for a family fun day (photo is shared/credited to Yorkshire Children’s Trust website).

Yorkshire Children’s Trust has expressed goals to soon expand their support to families by offering access to one-on-one counseling with professionals and creating ways for caregivers to access information easier in regards to welfare, available funding sources, and how to find and get support when dealing with debt while their child is sick or is disabled.

To learn more about the work the Yorkshire Children’s Trust have been doing for their community and how you can help, start here 

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Article: Harvey Hext’s Gift

Article: Harvey Hext’s Gift

July 30, 2017:  This day marks the birthdate for two very special boys, Harvey Hext and his twin brother, Spencer. Together as “partners in crime” they won the hearts of their hometown of Winford, the whole of Chew Valley, and later of people from around the world, by their cheekiness and ability to make people smile.

Many people came to know the twins, especially Harvey, through social media as friendships were made at the Believe In Magic party between Harvey’s mum, Sarah, and Johannah Deakin, (Louis Tomlinson‘s mum). Harvey was there with his family, as he had been battling neuroblastoma  for some time and the Believe In Magic party was given for seriously ill children. Johannah organized the event (which Louis gave for the charity) and spent time getting to know Sarah and Harvey. Being a mum of twins herself, Johannah took his story to heart and told Louis about him. Through Johannah’s support Harvey met Louis and became his friend.

In our “Fly High Buddy” article (Nov. 2016) we shared some of Harvey Hext’s journey,  which began with his diagnosis with neuroblastoma at the age of three. Harvey’s case was a unique one, as he was a very rare documented case of Down’s Syndrome with this type of cancer. While Harvey’s was a rare case, unfortunately many of the difficulties his family experienced in battling his disease are far too common for many other families of children also battling neuroblastoma.

The cancer treatments and therapy available are toxic and can be quite painful for small children. According to statistics from the Solving Kid’s Cancer website in the “high risk” cases, the survival rates sit at 40-50%, dropping to 10% after relapse. Once a relapse occurs, the few treatment options for neuroblastoma have been depleted. This means families must depend on using clinical trials for any additional therapy options.

Added to the stress of trying to find the best trial option for their child, is the exorbitant cost in any trial treatments sought outside of the U.K. (which is where nearly all these treatments are found). Being outside of the U.K. these trial treatments are not funded by the NHS and are extremely expensive. Most families need help to fund these treatments.

sarahBoth Harvey’s mom Sarah and Solving Kid’s Cancer recently posted on social media that the funds for the Harvey Hext Appeal which were initially intended to cover the cost of Harvey’s treatments, will go towards a new clinical trial.

A few weeks ago, Solving Kid’s Cancer posted an announcement about their involvement in a charity-initiated trial to develop a treatment therapy called MiNivAn that’s aimed to increase the survival rate of children with relapsed or refractory neuroblastoma. This trial project is an international cooperative effort, which got it’s beginning as charities and researchers worked together to approach a much-needed therapy treatment in immunotherapy for children with relapsed neuroblastoma. This trial will be the first of its kind to combine two antibodies and targeted radiation into one treatment. This innovative approach will provide a decrease in treatment-stress for a young child.

Solving Kid’s Cancer in their new study post (below) a special recognition for Harvey Hext. SKC also thanked his family, parents Sarah and David, his twin brother, Spencer, sister, Olivia and all the donors that generated funds for Harvey Hext’s Appeal for helping this trial move forward.

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The funds will support the clinical trial aimed at providing a new treatment so desperately needed for children who, like Harvey did, experience relapsing and refractory neuroblastoma. And, should the trial be successful, this treatment would be less toxic and painful on young children than most current alternatives. image

One of the best parts about this clinical trial is that it is a collaborative project between organizations in the UK, USA, and Germany. As a result, should this clinical trial be successful the treatments would be made available equally to all its citizens across international boundaries. These treatments will be done on an outpatient basis from centers located in each country. This collaborative work between countries will alleviate one of the biggest financial burdens on families who have so much emotional stress while caring for their seriously ill child. The money raised through charity fundraising where before was used to help cover a child’s extremely expensive treatments abroad, could now be put towards finding a cure to defeat cancer altogether (information involving the clinical trial MiNivAn is credited to the SKC website)

Harvey’s mum and dad, Sarah and David, shared this about their Harvey’s role in helping to fund the trial initiative moving forward.image

Harvey touched many people’s hearts and we can never express how grateful we are for all the support we received when fundraising for his treatment abroad. Sadly for us, this treatment was never to be but being able to use the funds for this new treatment, giving hope to other families, is a hugely positive step. Families having to raise funds, and travel across the world for treatment that could help their children beat neuroblastoma is an unacceptable situation to be in.

Thanks to Solving Kids’ Cancer’s work and the generosity of the public in supporting Harvey’s Appeal, we’ve been able to bring this treatment to the UK so families won’t have to face this overwhelming situation. Neuroblastoma is difficult to treat and trials are few and far between but without vital funds for clinical trials, children will continue to be taken by this cruel disease and families will continue to be devastated.”   –Sarah and David Hext

You can become involved in helping this trial for treating neuroblastoma by texting DNBL99 £1-10 to 70070 or visit their Justgiving page here.

Harvey’s legacy of giving also carries on through ASiblingsWish, a charity initiated by his mum, Sarah. In August, A Sibling’s Wish will be celebrating their first year as a registered charity in the UK.

ASW provides much-needed support to grieving siblings processing the loss of a brother or sister, by providing individualized personally decorated boxes to hold photo memories and treasures plus a Harvey Bear to cuddle. Find out more about the charity and how you can help on their website.

Photos credited to the Harvey Hext family, A Sibling’s Wish, and from the SKC website.

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Article: Niahm’s Next Step

Article: Niahm’s Next Step

July23, 2017: The neuroblastoma charity Niamh’s Next Step was founded by Chris and Sam Curry after the loss of their 5 year old daughter Niamh to neuroblastoma in May 2012. Niamh was diagnosed with neuroblastoma 18 months prior to her passing.

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Neuroblastoma is a rare form of childhood cancer mostly effecting children under the age of five. Each year about 100 children in the U.K. are diagnosed with neuroblastoma. This type of cancer develops from the neuroblasts, a type of undifferentiated nerve cells, and usually originates from the belly and the adrenal glands in the form of a solid tumor. The symptoms of neuroblastoma are often vague causing it to be diagnosed only in its late stages (stage IV). Symptoms include constipation, aches, swollen glands and skin bruises. When diagnosed in babies it can sometimes go into remission on its own; however when diagnosed in older children it often requires surgery and follow up chemotherapy and radiation therapy treatments. Unfortunately, children in remission from neuroblastoma can have a relapse. Relapsed neuroblastoma is more resistant to chemotherapy and is more challenging to treat. The survival rate to neuroblastoma is only 30% with better outcome for low grade neuroblastoma (cells grow at a slower rate). We have published on other two children affected by neuroblastoma: Harvey Hext and Chloe Balloqui who represent polar opposite outcomes of this disease. While Harvey  unfortunately lost his battle with the disease, Chloe is in remission and doing remarkably well.

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Neuroblastoma is still poorly understood and thus treatments are limited and not well tailored for children. This is because unfortunately, scientific research in this area lags well behind other types cancer research because resources are not set aside specifically for investigating neuroblastoma.

Niahm’s Next Step was founded specifically to try to fill this gap by raising funds  dedicated to neuroblastoma research. Indeed, since 2014, Niamh’s Next Step has been raising funds for SIOPEN (International Society of Paediatric Oncology Europe Neuroblastoma Group).  SIOPEN maintains a database containing all the data on clinical trials from the European countries that run High Risk Neuroblastoma studies. These data are collected and analyzed to benefit children with Neuroblastoma from the participating countries including the U.K. Since September 2016,  Niamh’s Next Step has been also supporting a collaborative Neuroblastoma research between Sparks and Great Ormond Street Children’s Hospital lead by dr. Sala who is investigating the use of stem cells to kill neuroblastoma cancer cells. Finally, Niamh’s Next Step has been supporting reasearch at ​the Institute of cancer research at Newcastle University where the team lead by Professor Tweddle is looking to develop new “targeted” therapies that kill neuroblastoma cells while sparing normal cells.

Niamh’s Next Step relies on business supporters and donations, and on the support of patrons in the entertainment and sport industries to raise its much needed funds and awareness of the disease. Louis Tomlinson’s mom Johannah Deakin was one of Niamh’s Next Step patrons. In our article published on January 10th, 2017, we talked about how Johannah got to meet Niamh’s parents in 2015 through Harry Styles’ mom Anne Twist who had met them at a Believe in Magic event. Jay invited Niamh’s parents to a One Direction concert in Birmingham as a treat to Niamh’s sister Hanna birthday. Unfortunately,  Johannah was patron of this charity for only a year before her passing on December 7th 2016 from an aggressive form of leukemia.

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Today Niamh’s Next Step got verified on twitter and its 55k+ followers on twitter are a testament that their efforts in spreading awareness on neuroblastoma are paying off. You can support their work by donating at this link.

Images are credited to Niamh’s Next Step.

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Article: Make-A-Wish Foundation

Article: The Make A Wish Foundation

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July 22, 2017: The Make A Wish Foundation is a charity that helps seriously ill children by creating a real life experience for them based off one of their wishes. They are founded in the belief that a child with a life threatening condition should have more than illnesses, hospitals, and treatments facing them each day. A child’s life should have joy, happiness, wonder and hope, and that is the mission Make-Wish-Foundation strives to do. As it is stated on their website:

Whether it’s starring in their own films, walking with dinosaurs, going on an amazing holiday, meeting a celebrity hero, or having a life-changing bedroom makeover; our wishes are varied, personal and, most importantly, magical.”

One of the most fascinating results that have come from the vision of Make-A-Wish’s mission to bring the joy and hope back into a child’s life, has been through the realm of transforming what seems impossible to possibile.

In the video below, a study was conducted on the potential impact a granted wish to a child can bring to their mental, emotional or physical well-being.  The study revealed that by giving a child the experience they have wished for but never thought possible, transforms a child’s belief from the impossible to the possible in their life. And, if this can be done with a dream of, say being a pirate or battling in a Star Wars film, it opens the realm of possibilities with their health.

Through the impact and vision of the Make A Wish Foundation, more organizations around the world have drawn inspiration to bring this opportunity to children around the world. Beginning in 1986, the Make A Wish UK (MAWUK) started with a few volunteers and generous local donations for support. With their hard work MAWUK was up and running and able to grant wishes to four children within their very first year, beginning with granting a child’s wish to visit Disneyland. They continue to grow year after year primarily through the efforts of many volunteers who host events and continue to spread the word of their work. Through sponsorships, donations and local fundraising their hard work provided enough for MAWUK to grant 100 wishes by their fourth year!

Still to this day, Make-A-WishUK depends heavily on its volunteers, fundraisers and donations which has allowed MAWUK to grant over 11,000 seriously ill children special wishes to date. With the help of many celebrities, athletes, and musicians (many whom special dreams are centered around), who generously donate their time, MAWUK continues to grant wishes to ill children every year.

In our May 4, 2017 article we talked about Louis Tomlinson’s special message to a young girl named Daisy whose wish was to meet him (as he was her favorite from One Direction). Daisy caught Louis’ attention because despite her fist wish being to meet him, she chose her second wish so that she could include her whole family into a Disney trip provided by Make A Wish UK. After learning about Daisy’s generousity towards her loved ones, Louis made sure he sent her a special message to let her know he cared.

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Make-A-WishUK needs your help. There are so many ways to keep the special wishes coming for seriously ill children and bring some joy and hope their way:

Here’s where to start  ~Sponsor A Wish✨
~Be a volunteer

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Article: The Eden Dora Trust

Article: The Eden Dora Trust

July 22nd, 2017: The Eded Dora Trust was founded on the first World Encephalitis Day on February 22nd 2014 by Petrina, mother of then 9 years old Eden, who had been recovering from encephalitis.

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Encephalitis is a brain inflammation caused by viral or bacterial infection or by autoimmune disease, which often follows a mild infection. The disease can affect anybody at any age and in fact there are over 6,000 new cases of encephalitis per year in the UK alone. The initial symptoms of encephalitis are flu-like and are often overlooked. At a later stage (hours or days later) encephalitis can cause seizures, inability to see or speak, aversion to light, high temperature, and even loss of consciousness. Encephalitis can be fatal if not treated promptly. Treatment consists of targeting the cause of the disease with anti-viral or antibiotic medications and in managing the negative effects of the disease on brain function; for example with anti-seizure medications. The promptness at which the disease is treated is essential for a good outcome, therefore patients are often treated with both anti-viral and antibiotic medications at the same time, even before the cause of encephalitis is clearly established.

Even with the most aggressive and timely treatments available, encephalitis is likely to cause some loss of brain function. Sometimes, the loss of brain function is minor causing the affected individual to become “mentally tired” especially early on after recovering from the disease. Other times the consequences are much more severe and things like recurring headaches, difficulties with memory, concentration and balance, mood swings, aggression and clumsiness are reported. In some cases the individual can also develop epilepsy.

Screen-Shot-2014-07-01-at-14.21.54Eden was 6 and half years old when on March 2nd 2011 she developed encephalitis. Her case began with flu-like symptoms until she had a massive seizure that brought her to the hospital. Her case was severe and caused her to initially lose consciousness and then, even after regaining consciousness, to lose the ability to speak and see for days. Her recovery has been slow and tasks that took her one hour now take her an entire day.  In fact Eden has been left with an acquired brain injury (ABI) that affects her ability to think and function.  Her mom Petrina states on the Eden Dora Trust charity website “Eden looks very much the same as she used to and nearly 3 years on one or two aspects of her personality are now as they used to be.  But she is very different.” These words really capture what it means to live with the aftermath of encephalitis.Screen-Shot-2014-07-01-at-14.21.42

The mission of the Eden Dora Trust charity is to provide support to children with encephalitis and their family, to raise awareness of the disease and to support scientific research into the causes of this disease. The charity slogan is SPEAK: Support, Provision, Education, Awareness, and Knowledge.

The charity lists prominent people in the entertainment industry, sport and business as patrons including singer/song writer former One Direction member Louis Tomlinson. Louis has been a passionate supporter of the charity from its inception and has developed a sincere friendship with Eden. Credited from The Eden Dora Trust website Louis states “Despite her illness Eden is a truly incredible little girl and we have become great friends 🙂”. In our article published on June 11th, 2016 we wrote about Louis’ participation to the Eden Dora Trust charity tea held on October 30th, 2015.

If you are interested in supporting this charity visit their donation page. You can donate via JustGiving or by texting if you are in the UK. Read here how some of the donated funds have been used.

Pictures credited to the Eden Dora Trust website.

 

 

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