Mrs. Anne Twist supports #JeansForGenes

DncgJFzXsAANsCgSeptember 23st, 2018: On September 21st, Harry Styles’ mom Mrs. Anne Twist posted both on Twitter and Instagram in support of the campaign #JeansForGenes.

Jeans for Genes is a campaign run in the UK on the penultimate Friday in September by the charity Genetic Disorders UK. This campaign raises funds to support research into and treatment of genetic disorders in children. Funds raised also support the needs of children affected by genetic disorders and their families, and are used for educational porpuses and to raise awareness of genetic disorders. One of the ways Jeans for Genes does this is through the distribution of funds via their Grant Program. Any entity that works to support children with genetic disorders or their families can apply to one of these grants. A list of the grant recipients for 2018 is listed at this link.

It is estimated that each year one in every 25 children in the UK is born carrying a genetic mutation that leads to one of 6,000 genetic disorders such as cystic fibrosis, various types of myotonia congenita, sickle cell anemia, fragile x syndrome, and many others. Some genetic disorders are diagnosed at birth and others take years for the diagnosis.

 

With the advancement of science, it has now become possible to treat many of these disorders, leading in some cases even to a cure, especially through the use of gene therapy. This is the case for example of the X-linked severe combined immune deficiency X-SCID called also ‘baby in the bubble’ syndrome. Ten children carrying this genetic mutation were successfully cured using gene therapy at the Institute of Child Health at Great Ormond Street Hospital in London. The funds needed for the development of the gene therapy and for the treatment of these children were raised through the Jeans for Genes campaign.

The campaign, which was launched in 1992, consists of encouraging people to wear jeans and to make a small donation to support the work of the charity Genetic Disorders UK. The charity encourages people to organize fundraisers for Jeans for Genes day at work and school, where the “wearing jeans day” can be turned into a fun day in which co-workers can challenge each other to dress up their jeans or add accessories. The charity encourages everybody to participate, even people that due to dress codes or other reasons cannot wear jeans. Even wearing a denim or blue accessory, or one of the “Jeans for Genes” t-shirts can be a way of participating in the campaign and can be an excuse to donate.

To learn more about the campaign and how you can support Jeans for Genes, visit their donation page.

Pictures credit to Jeans for Genes website and Twitter account. Mrs. Anne Twist’s pictures are credited to her Twitter account.

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The charity A Sibling’s Wish: turning grief into support for bereaved siblings

September 17th, 2018: September is Childhood Cancer Awareness Month which brings attention to the problem of childhood cancer, the challenges of treating cancer in children, the underfunded research in childhood cancer, and all the issues associated with a child battling this disease, including grief and bereavement.

A Sibling’s Wish is a UK based charity that was founded after the loss of a child to childhood cancer. The charity was founded in August of 2016 by Sarah, the mom of Harvey Hext a young boy who passed away on November 29th, 2015, following a long battle with stage 4 high-risk neuroblastoma.

image35Harvey became well known not only in the UK but around the world for his friendship with One Direction Louis Tomlinson and his mom Johannah Deakin. Johannah was the first to meet Harvey and his family at a Believe in Magic event in 2013 at the London Zoo. Harvey had been diagnosed with stage 4 high-risk neuroblastoma at the age of 3 in 2010. His parents had noticed that the previously active 3 years old had started having problems walking, was complaining of a tummy ache, and had diarrhea. Following a doctor’s visit, Harvey was referred to a specialist in Bristol who gave the family the devastating news after blood tests, CT scans, and biopsy of a tumor. The Hext family also found out that Harvey was an extremely rare case because there are very few children in the world with Down Syndrome that are diagnosed with neuroblastoma. Following the diagnosis, Harvey underwent surgery, chemotherapy, and radiation and was declared in remission. Unfortunately, in October 2014, cancer returned and Harvey had to undergo another surgery to remove a tumor in his chest. Other tumors found in his abdomen though were deemed too dangerous to operate on.

 

When Johannah Deakin met Harvey and his family at the Believe in Magic event, she was so moved by his story that she immediately told Louis. After hearing about Harvey, Louis decided to do as much as he could to support Harvey and his family and to give them precious memories to hold on to. Louis sponsored a vacation to Disney World in Paris, VIP treatment at a One Direction concert, and numerous personal gifts to Harvey and his family. When in August 2015 Johannah and Louis organized and sponsored the Believe in Magic Cinderella Ball for sick children, they treated Harvey and his entire family to VIP treatment. During the many months that Harvey’s and Louis’ families were in touch, they developed true friendships. When Harvey passed away, Louis posted the tweet “Fly high buddy” showing a picture of Harvey with his huge smile.

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During Harvey’s battle with neuroblastoma, the family had set up the Harvey Hext Appeal, a fund that through donations, helped pay for the costly cancer treatments for Harvey. The remaining of the funds that the family did not use, were donated to Solving Kids Cancer, after the passing of Harvey (read our article here).

After the passing of her beloved Harvey, Sarah had the idea of setting up A Sibling’s Wish to provide comfort and support to siblings of children that pass away. The idea came to Sarah from personal experience. The Hext indeed have other two children, Spenser who is Harvey’s twin brother, and older Olivia. Sarah realized early on that bereaved siblings have indeed very little support. Parents spend so much of their energy attending the sick child and dealing with their own loss after they pass away that they have little time and energy to dedicate to their other children. Hospitals and end of life care teams agree that there is definitively a huge void when it comes to supporting children experiencing the loss of a sibling.

The idea behind A Sibling’s Wish is simple: create beautiful and personalized memory boxes where the bereaved child can store photographs, notes, and other memories of their lost sibling. The memory box can help challenge some of the feelings of loss and can be cherished for years to come. Sarah adds to the donation also a stuffed bear named Harvey which has a hidden pouch where the bereaved child can store the most precious memory of their sibling.

 

From its inception, A Sibling’s Wish has made huge strides and it has become so active recently that it has needed to move its activities from the Hext’s family home to an office space. Louis Tomlinson has continued to support the charity from behind the scenes including donating a brand new laptop in the early days of the charity.

Some of the achievements of A Sibling’s Wish and its founder Sarah Hext over the last two years are:

  • In 2016, soon after becoming officially registered as a charity,  A Sibling’s Wish became an official partner charity of . #UKCharityWeek is a week during which donations and fundraising are encouraged to help UK charities. This week usually falls within the first two weeks of December, when people are more willing to donate since the holidays are just around the corner.
  •  Also in 2016, A Sibling’s Wish became affiliated with Together for Short Lives, a UK based charity which speaks out for children and young people who are expected to have a short life.
  • In 2017, A Sibling’s Wish became Peace and Coffee’s charity of the year. Peace and Coffee, a company that distributes organic coffee and tea, selects a handful of charities each year to be voted the charity of the year.  As the 2017 winner, A Sibling’s Wish received all proceeds donated between 04 August 2017 and 03 August 2018.
  • In October 2017, Sarah Hext attended the Women of the Year Lunch. This is an event that celebrates and awards women that would not be otherwise recognized for their work. In attendance was also Camilla Duchess of Cornwall.

 

  • A few days ago A Sibling’s Wish celebrated its 300th memory box. In only 2 years from the day they became a registered charity A Sibling’s Wish has distributed these many memory boxes all over the UK. Indeed Children’s Hospice Southwest, one of the first entities to express interest in the memory boxes, estimated that they would need approximately 60 boxes per year.

aswA Sibling’s Wish is doing important work to fill a void in the support of families that experience the loss of children to childhood cancer and other diseases or accidents. We expect them to continue their amazing work and we hope they will expand even more with their work to reach all the families in need in the UK.

We have talked about Harvey and Sarah numerous other times. To learn more about them and the work that A Sibling’s Wish does, check out our articles dated 10/27/177/30/17,  11/30/169/8/16, 7/19/16, and 5/30/16. Visit also their official website to learn more about how you can help.

Pictures are credited to A Sibling’s Wish website, FaceBook page, and Twitter account.

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Harry Styles, TPWK Series: Jacob’s Heart Children’s Cancer Support Services

JH-Logo-20-LongSeptember 13th, 2018: In San Jose, the sale of Harry Style’s “Treat people with Kindness” hair ties led to a donation to Jacob’s Heart Children’s Cancer Support Services.

Founded in 1998, the Jacob’s Heart Children’s Cancer Support Services support children and families through the diagnosis and treatment of childhood cancer including providing psychological support during the illness and support through anticipatory grieving and bereavement. The mission of the charity is indeed to improve the lives of children with cancer and their families.

When a child is diagnosed with cancer the entire family is deeply affected by the news. The Jacob’s Heart Children’s Cancer Support Services believe that by supporting the family, the family itself can be empowered to fully participate in the care of the sick child.

Below groups of volunteers at the Jacob’s Heart Children’s Cancer Support Services.

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In the last 10 years, this charity has supported hundreds of children and teens affected by cancer, as well as thousands of family members. It has seen hundreds of children go into remission and others succumb to the disease. Some of the principles that guide the work of this charity are:

  • Each child has a dignity that should be preserved throughout the course of the disease.
  • Every child going through cancer needs a strong and supported family that can be there through their treatment.
  • Each family facing the loss of a child should receive support and be helped through the anticipated grief.
  • Families that lose a child to cancer should receive support through their bereavement with no time limit.
  • Each child and each family are unique and should receive the most personalized support and care.

The Jacob’s Heart Children’s Cancer Support Services offers several different services that accomplish their mission of supporting children and families facing a childhood cancer diagnosis. These include bilingual counseling service, community education on childhood cancer and grief, financial assistance for families in need, groceries delivered directly to families during treatment, transportation to and from the hospital, financial support with bills and even grocery, art projects, family camp, holidays gifts and connections with other families during the holidays, and celebration of milestones.

 

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The Maslow’s Hierarchy of Needs pyramid showing the services offered by the Jacob’s Heart Children’s Cancer Support Services that meet each one of these needs.

 

The charity operates in the belief that the needs of the children and the families must be met according to the Maslow’s Hierarchy of Needs pyramid, with the physiological needs met first, followed by the need of safety, of love and support, of emotional well-being, and finally of hope and healing. You can learn more about the services offered to meet each fundamental need of children affected by cancer and their family according to the Maslow’s Hierarchy of Needs model at this link.

The work of the Jacob’s Heart Children’s Cancer Support Services is done by volunteers who can work in any of the services provided by the charity from writing thank you note, to grocery shopping for families, organizing events, fundraising, performing administrative work and so on. There is also a special internship program called Jacob’s Heart Internship for people that are able and want to commit their full time for at least 6 months to the charity. Additionally, the Full Hearts Grocery Program offers healthy meals to families as well as a bag of grocery and a pantry service where families can go to pick up food items and clothes. Finally, the charity has a youth volunteer program for high schoolers and middle schoolers called Change Heart where school children can run fundraisers to benefit the Jacob’s Heart Children’s Cancer Support Services.

You can help the Jacob’s Heart Children’s Cancer Support Services by donating on their main page here. If you are interested in volunteering for this charity visit this link.

Pictures and images are shared from the Jacob’s Heart Children’s Cancer Support Services webpage. The picture of Harry Styles was taken by Helene Pumbrun and is shared from his Twitter account.

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Harry Styles, TPWK Series: The Center for Childhood Cancer Research, CHOP

September 8th, 2018: At his Philadelphia show, Harry Styles donated the proceeds from the sale of the “Treat people with Kindness” hair ties to the Center for Childhood Cancer Research at the Children Hospital of Philadelphia.

 

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Stephen P. Hunger, MD, Chief of the Division of Oncology, Director of the Center for Childhood Cancer Research, and holder of the Jeffrey E. Perelman Distinguished Chair in the Department of Pediatrics at Children’s Hospital of Philadelphia, PA.

The Center for Childhood Cancer Research was founded in 2007 at the Children Hospital in Philadelphia as a research center specialized in childhood cancer. The Institute brings together the best basic science and clinical researchers in the field of childhood cancer with the goal of “eradicating the pain and suffering caused by cancer in children”. The strength of this institute is its multidisciplinary approach where all types of childhood cancer and all aspects related to cancer in children, including the psychological consequences of the disease, are investigated to find the best therapeutical approach possible. The fact that the institute is part of the Children Hospital makes it possible for the newest research to be translated immediately into clinical trials.

 

Some of the areas of research that are the focus of the work done at the Center for Childhood Cancer Research are neuroblastoma, neuro-oncology, retinoblastoma, leukemia, the genetics of childhood cancer, solid tumors, and cancer pathobiology. The psychological consequences of the diseases are also investigated both in children and young adults, as well as cancer survivorship including the long-term health effects of chemotherapy. For example, one research area focuses on the effects of cancer treatment on fertility.

 

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The tweet posted by The Children Hospital of Philadelphia account, thanking Harry Styles for the donation

 

One of the recent breakthrough discovery from one of the research teams at the Center for Childhood Cancer Research is that the genetics of childhood cancer is substantially different from the genetics of cancer in adults. Using DNA samples from over 1,700 childhood cancer patients and comparing them with a pool of DNA samples from adult patients, the team discovered that only 45% of the genes involved in the disease is shared between the two groups. This finding highlights that cancer in children is biologically different from cancer in adults and therefore it should be treated using different therapeutic approaches. This finding underscores, even more, the need to investigate the biological bases of childhood cancer and not rely on what is known for cancer in adults for designing treatments.

The work at the Center for Childhood Cancer Research is supported primarily by philanthropic donations. Donations can be large and made by corporations or organizations, but also small and made by individuals. To learn more about how you can help, visit the Center for Childhood Cancer Research donation page.

Pictures and images are shared from the Center for Childhood Cancer Research website and Twitter account. Harry Styles picture was taken by Helene Pambrun and is shared from his twitter account.

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Mrs. Anne Twist tweets in support of #back2school anti-bullying campaign

September 5th, 2018: Yesterday Harry Styles’ mom Mrs. Anne Twist tweeted in support of the @antibullyingpro campaign. She posted a tweet with a picture of her younger self in a school uniform and said that her advice is to speak to someone if you’re struggling in any form.” Mrs. Twist supported this campaign last year and in 2016 too.

This anti-bullying campaign was launched by @antibullyingpro in 2016 following the suicide on April 27th, 2016, of Lucy Alexander’s son Felix. Felix at the time of his passing was only 17 years old and had been enduring bullying for the last 10 years of his life. Following Felix’s passing Lucy vowed that she was going to do everything in her power to prevent other tragedies like this to happen again.

To help with bullying prevention, Lucy wants to have an anti-bullying ambassador in every single school in the UK. Bullying in general and in particular in school, where children spend up to 11,000 hours each year, has indeed a huge impact on the life of a child or teenager. The effects are long-term and often protract even into adulthood. Children that are bullied often suffer from low self-esteem, depression, and anxiety. By training children on what to do if they are the target of bullying or if they witness bullying, bullying can be significantly reduced.

Below is Lucy Alexander talking about Felix (shared from the  AntiBullyingPro website)

On its website, has several testimonies from celebrities describing their experience with bullying in school when they were growing up and the impact that bullying had on their lives. You can watch the videos at this link.

To participate in the  campaign, which takes place in September when children are due to start school, AntiBullyingPro is asking to post on social media a picture of yourself during your school years and to post an advice to children that may be anxious about starting a new school or that may be afraid of being target of bullying. AntiBullyingPro is also asking for donations that can be made by text to support the training of ambassadors. A list of advice to school children and parents is also available on their website.

AntiBullyingPro is an anti-bullying effort launched by the Diana Award in 2011. The Diana Award was established in 1999 by the British Government, following the passing of Princess Diana, with the goal of keeping Diana’s legacy alive. In particular, the Diana Award works in the belief that young people have the power to change the world, a belief that Princess Diana shared. The Diana Award works to identify and elevate the voices of those young people that go beyond what is expected to help and support their local communities.

Consider sharing a picture and an advice to support school children who may face bullying.

To learn more about the anti-bullying efforts of AntiBullyingPro visit their site here. More information about the Diana Award, which became a registered charity in 2006, is available here. Read also our article on AntiBullyingPro #StandUpToBullying campaign here.

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Harry Styles, TPWK Series: Fundacion Natali Dafne Flexer

17190974_1268421399878574_697846323061917709_nSeptember 3rd, 2018: In Buenos Aires, the funds raised through the sale of Harry Styles’ “Treat people with Kindness” hair ties went to Fundacion Natali Dafne Flexer.

Fundacion Natali Dafne Flexer is a non-profit organization that works to support children with cancer and their families in Buenos Aires and throughout Argentina. The organization was founded in 1995 and since then has helped more than 3,000 families cope with many different aspects of childhood cancer.

A cancer diagnosis for a child and their family is nothing short than a complete shock. Everybody who is close to the diagnosed child including parents, siblings, grandparents and even friends have a very difficult time, especially in the beginning, coping with the news. That’s why one of the services that Fundacion Natalie Dafne Flexer offers is information on childhood cancer in the form of booklets that are distributed to parents and other members of the community.

The association works also to provide the best medical care possible to all children diagnosed with cancer in Argentina recognizing that often it is harder for children from rural areas to obtain the best care. Indeed, one of the missions of the association is equality in treatment regardless of whether the child is from a big city or the countryside. In the context of medical care, one of the services the association offers is free medications. The association collects medications that have not expired from families and from other sources and makes them available to children in need of them.  In addition to medical support, Fundacion Natali Dafne Flexer also offers emotional support to both children with cancer and their families and it does so mostly by visiting hospitals.

Fundacion Natali Dafne Flexer also offers entertainment to children diagnosed with cancer both at their home and at the hospital throughout the duration of their treatment. Entertainment is offered by lending TV sets and video games, by organizing parties and special events centered around crafts and music. There are also excursions to the movie theater, the zoo, or other destinations that are organized by the association, for both children and their families.

The association also offers legal advice and information about medical insurance, it offers wheelchairs, prosthesis, and crutches, transportation support for families that live far away from the hospital, and even works with schools to help children keep up with their academic work.

In addition, the association has two groups that work with them and that are supported in their mission by people that have been personally touched by childhood cancer. One of the groups is supported by parents of childhood cancer survivors and it raises funds and awareness for Research in Pediatric Oncology. The other group was founded by two mothers who lost their daughter and son respectively to cancer. This group directly supports the Posadas Hospital Pediatric Oncology Department. For example lately, this group raised funds to rebuild part of the department. This group also functions as a link between the families and the association making sure that the families get what they need throughout the treatment of their child.

Work of Fundacion Natali Dafne Flexer can be supported by signing up to be a volunteer, by fundraising, or by donating directly to the association. Visit their website to learn more about how you can help.

Picture are images are credited to Fundacion Natali Dafne Flexer website and Facebook page, and to Helene Marie Pambrun.

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Harry Styles, TPWK Series: the Children’s Cancer Association of Japan (CCAJ)

ccajSeptember 1st, 2018: In Tokyo, Japan, the sale of Harry Styles’ “Treat People with Kindness” hair ties lead to a donation to the Children’s Cancer Association of Japan (CCAJ), the only non-profit organization in the country that works to improve the lives of children affected by cancer and of their families.

In Japan, it is estimated that 16,500 children are currently being treated for cancer. While thirty-five years ago the vast majority of children with cancer succumbed to the disease, nowadays more than 70% of children diagnosed with this disease survive and go into remission. Thus, for every child that dies of cancer, there are 3 that survive and that need support and care (both medical and psychological) throughout the course of the disease.

The Children’s Cancer Association of Japan was founded in October of 1968 by a group of parents with children affected by cancer. These parents recognized that there was very little support for children affected by this disease and for their families. Often children succumbed to the disease and parents were left with dealing with the loss of a child which sometimes resulted in the separation of the parents, serious mental health problems, and even suicide. The mission of the Children’s Cancer Association of Japan is to provide the best care and support possible for children affected by cancer, to provide financial and counseling support to families, and to help childhood cancer survivors adapt to and integrate into the fabric of society. The Children’s Cancer Association of Japan does this regardless of the children socio-economical status.

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Pictured here on the right is the president of the Children’s Cancer Association of Japan

More specifically, the Children’s Cancer Association of Japan provides different types of services for children with cancer and their families, to help alleviate the burden of the disease. These include:

  • Counseling service. There are currently 15,000 children in Japan with cancer that receive regular counseling from the Children’s Cancer Association of Japan.
  • Self-help groups.
  • Lectures and meetings that provide information on childhood cancer and related topics.
  • Fun activities in hospitals wards where children affected by cancer are being treated.
  • Summer camps.
  • Lodging assistance for families that have to travel far to get their child treated.
  • Financial assistance for families. There are currently 200 families in Japan who are receiving some form of financial assistance from the Children’s Cancer Association of Japan.

The Children’s Cancer Association of Japan trains its own volunteers who are prepared to deal with the delicate issues associated with childhood cancer. This organization also invests in research aimed at finding better treatments for childhood cancer by supporting 5 research projects each year.

Furthermore, the support does not end when the child goes into remission or is cured. The Children’s Cancer Association of Japan continues to support these children even when they become childhood cancer survivors. The association does so through its Gold Ribbon Fund which is geared towards helping survivors adapt to society.

To learn more about the Children’s Cancer Association of Japan, visit their website here.

Pictures and images are credited to the Children’s Cancer Association of Japan website and Facebook page, and to Helene Marie Pambrun.

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