Article: Gemma Styles goes whitewater rafting to support Parkinson’s UK

Article: Gemma Styles goes whitewater rafting to support Parkinson’s UK

IMG_0536August 24th, 2017: Two days ago Gemma Styles announced on twitter that she will be taking part in a whitewater rafting event on September 10th organized to raise funds for Parkinson’s U.K. The event will be in Scotland and she will be accompanied by her boyfriend Michal Mlynowki (Mish). She has set up a justgiving page to help with the fundraiser just like her mom Anne Twist did for the same event in May of this year.

The Styles/Twist family has been a strong supporter of Parkinson’s U.K. over the last few years as they have direct experience with this disease (see our articles on May 6th 2017,  April 20th 2017, and July 11th 2016). Indeed, Anne’s father who is now in his early 80s,  has been diagnosed with Parkinson following the development of the initial symptoms when he was 70 years old.

IMG_0538Parkinson is a progressive neurological disorder caused by the degeneration of an area of the brain called the Substantia Nigra which produces the neurotransmitter dopamine. The Substantia Nigra via release of dopamine controls areas of the brain that mediate movement and reward. Thus, degeneration of this area of the brain in Parkinson causes symptoms such as tremor, unstable gait, depression, and anxiety. There is no cure for Parkinson but there are therapies including pharmacological therapy using precursors of dopamine and exercise-based therapy that can help slow the progression of the disease and maintain motor control.

The charity Parkinson U.K. is dedicated to raise funds to support cutting edge research to find a cure for Parkinson and to support patients and their families as they learn how to deal with this debilitating disease. Anne’s father is one of the people who has been benefiting from the help from this charity through support by nursing staff. From Parkinson U.K. webpage:

“Having Parkinson’s can feel overwhelming if you don’t have the right information and support. We’re here to help everyone feel in control of life with Parkinson’s.”

Please visit Gemma’s and Anne’s justgiving pages for the Scotland whitewater rafting event and consider donating to this cause. You can also directly donate to Parkinson U.K. by visiting their donation page.

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Article: A Sybling’s Wish, a year of cherished memories for siblings

Article: A Sybling’s Wish, A year of cherished memories for siblings

A Siblings Wish LOGO no text August 19th, 2017:  A Sibling’s Wish is marking its very first year as an officially registered charity in the UK. A Sibling’s Wish has reached an important milestone by delivering its 100th memory box to a grieving child.

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A Sibling’s Wish is a UK based charity founded by Sarah Hext, the mother of Harvey Hext, who lost his battle with neuroblastoma on November 29th, 2015. Harvey was one of the children that took part in the  Cinderella Ball organized by Believe in Magic with the help of Louis Tomlinson’s mother Johannah Deakin and who became close friend of Louis and his family. Harvey had two siblings, twin brother Spenser and older sister Olivia. After the passing of Harvey, Sarah came up with the idea of creating memory boxes for children that lose their siblings. The idea came about after the realization that often children that lose their siblings have the unmet need to express their loss.

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Johannah Deakin and Harvey Hext

In previous articles (here and here), we have shared how A Sibling’s Wish charity has been helping grieving siblings process the loss of their brother or sister by providing them with memory boxes to hold items of special meaning to the child. These memory boxes are very uniquely made; each individually designed by the child with whatever colors and themes, special pictures or poems they choose. The memory boxes also include a special “Harvey Bear” to keep that contains a small pouch in the back for holding something special if desired.

 

The memory boxes are offered at an appropriate time by a lead professional, sometimes when end of life is near or sometimes after the sibling/child has passed, depending on each individual family.  In some cases they may be designed by children who are planning their own funeral, as difficult as this may seem to be, this can be an important part of the process, particularly with teenage children who have a long terminal diagnoses. In these cases it be used as a gift to their parents or siblings.  The memory boxes have proven to be very helpful for opening dialogue with a child who have questions or need help processing their bereavement.

​When asked in an interview with MerrynCharity Magazine about what they learned or advice they can give to others about running a charity, Sarah replied:

“We have found one of our greatest strengths has been working with other charities and supporting each other. You have to be 100% committed and it’s hard work to start with but the benefits completely outweigh the hard work. Being able to help people at the worst time of their lives is very satisfying.”

Currently, A Sibling’s Wish charity is working with a number of bereavement services; these organizations have professionals who work with the families and help establish if a memory box for a sibling is needed. These professionals contact A Sibling’s Wish with a referral and the designing of a special box gets underway.

The following is a list of the organizations that provide bereavement services that connect families with A Sibling’s Wish (shared from their website):

  • Clic Sargent
  • A Child of Mine
  • The Henry Allen Trust
  • The Children’s Hospice South West
  • Together for Short Lives
  • Jessie May
  • Hugs from Henry
  • Bristol Childrens Hospital
  • Harry’s Rainbow
  • Children’s Community nursing teams NHS
  • Candlelighters
  • South west and south wales organ donation nurses.

IMG_0516A Sibling’s Wish work is supported by direct donations through the JustGiving website, and by fundraisers. During this past year several local businesses have indeed donated to A Sibling’s Wish and funds have been raised through events including charity evenings, walks and a runs. Louis Tomlinson has also personally donated to the charity by providing them with a much needed laptop to run their business. Awareness of the charity has also been raised globally via social media. One initiative taken last year in April stands out: with the hashtag #highfiveforsmallcharities photographs of people with the name of a small charity on their hand were spread on social media. A Sibling’s Wish had several people, including our twitter account (@1DFABNDA formally @OneDirectionNDA) post such pictures to help raise awareness of the charity.

IMG_0517A Sibling’s Wish was nominated this year for Peace and Coffee charity of the year. Peace and Coffee is a company that distributes organic coffee and tea, which selects a handful of charities each year to be then voted charity of the year.  The winner of the Charity of the Year’  receives all proceeds donated during the following year (for this year donations will be collected between 04 August 2017 and 03 August 2018).

On August 16th Peace and Coffee announced that  Sibling’s Wish had indeed been selected as charity of the year and therefore will be receiving the next year proceeds donated to their company. Congratulations to Sibling’s Wish!

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Visit A Sibling’s Wish website to learn more about how you can help this deserving charity whose work is focused bereaved children.

Pictures’ credit to A Sibling’s Wish website and Facebook page.

 

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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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