Written By GingersnapComments Off on Damian Lewis Urges Fans to Sponsor CureEB Marathon Runner
Regent’s Park Marathon for CureEB
by Staff | NY Times Post | October 1, 2021
Damian Lewis urges fans to sponsor mum running London marathon to fund research into daughter’s rare genetic disorder. Mum Sharmila Collins is running London marathon on Sunday, October 3, 2021 around Regent’s Park to fund research for her 19-year-old daughter’s rare genetic disorder which causes her skin to wound and blister. This will be her twelfth marathon for her daughter, who suffers from Epidermolysis Bullosa (EB).
Sharmila, the founder of the charity CureEB, is desperately looking for a cure for her daughter Sohana’s devastatingly painful genetic skin disorder.
And despite saying she “hates running,” the mum is determined to keep going because she “hates EB more.”
Supporting the cause, Billions star Damian Lewis said, “I am extremely proud to be a patron of CureEB. The pain Sohana has to live with daily is unimaginable.”
“Her condition will worsen and we now have a race against the clock to find and fund effective treatment.” Sharmila is incredibly driven and relentlessly focused on improving not only her daughter’s life but also those of other children with this terrible condition. She has raised millions of pounds for research into EB, at times single-handedly. It’s hard enough to run one marathon but 12 in a year is extraordinary, particularly when Sharmila works so hard every day to find a cure for EB. I am in awe of her. Please sponsor Sharmila and help change the lives of these children and young people.””
If you’d like to sponsor, please donate to CureEB on their Just Giving page here
If text giving is easier, please text CURE to 70300 to give £3. Or you can text CURE 5 to give £5 and CURE 10 for £10.
Written By GingersnapComments Off on Damian Lewis Attends GFI Charity Day for Sohana Research Fund/Cure EB – Sept 11, 2017
On the Trading Floor for a Good Cause
by Damianista | Fan Fun with Damian Lewis | September 11, 2018
We all know Damian Lewis is a proud patron of Cure EB, formally Sohana Research Fund. Damian ROCKED the trading floor on Charity Day in 2014 picking up the phones to help raise money for Sohana Research Fund/Cure EB as well as Great Ormond Street Hospital Children’s Charity.
And today he was BACK on the trading floor, this time at GFI Group, now a division of BGC partners, representing Cure EB/Sohana Research Fund to help raise funds and find a cure for Epidermolysis Bullosa, to make the world a better place for the bravest girl he has ever known and all the butterfly kids out there.
Damian Lewis representing Sohana Research Fund at GFI Charity Day, September 11, 2017 – Source: Getty
Written By GingersnapComments Off on Designing His Own Philanthropy, Part 1 – May 11, 2017
Designing His Own Philanthropy, Part 1
by Lynda – guest blogger for Fan Fun With Damian Lewis – May 11, 2017
Part I of Lynda’s detailed survey into Damian’s generous heart. In case you missed Part II, it is here.
Lynda, one of Fan Fun With Damian Lewis’ first and constant supporters, has been a consultant working with charitable families, foundations and trusts throughout the U.S. for more than 25 years. We are extremely thrilled to have her as a guest blogger putting her expertise to work in a survey about our favorite actor’s philanthropic efforts.
Philanthropy, a word derived from ancient Greek roots, means love of humanity. In modern terms, it is the act of promoting the welfare of others through charitable donations and charitable acts.
GIVE and GET are two critical commandments in the world of philanthropy. Philanthropists GIVE their money plus their time, often rolling up their sleeves to undertake physical, onsite work days on behalf of a cause important to them, whether building a house or needed playground or making an educational film or counseling young aspiring entrepreneurs. It is impossible for any one person or one family to give to all of the worthwhile charities in the world. So, people have to ask themselves, “What issues or challenges are important to me and my family?” Strategic giving involves setting charitable priorities and selecting recipients wisely through vetting and paring down. Some philanthropists sponsor fundraising events – luncheons, banquets, galas, marathon runs – that “get” or encourage others to give. And public figures can also lend their celebrity to make meaningful contributions to charitable causes. In doing so, they can GET others to donate money, time and effort. In the case of Damian Lewis, he has mastered so many of these generous strategies.
We cannot speak to the sums of money that Damian Lewis and Helen McCrory have donated to charities in the U.K., the US and internationally. We can only assume that their pounds and dollars support the organizations to which they have given their time and for which they have solicited dollars and time from their friends, their fans, and the public. And, although I tried several times during my recent London trip to get Damian to tell us for this Fan Fun post about his charitable priorities and his family traditions of giving (to no avail on the mini-interview front, I’m sorry to say), we can look at the recipients of his generosity over the years to infer some of his philanthropic priorities.
Source: Sohana Research Fund
One prominent example, which we follow regularly on this blog, is how Damian has brought his celebrity – his visibility – to Sohana Research Fund. A “rare disease” needs the help of a celebrity to shine a light on the cause and to help raise funds for needed medical research and treatment. In February 2012, as a celebrity supporter of the Fund, Damian went to Number 10 Downing Street as part of ICAP Charity Day. Damian became a patron of the Sohana Fund in 2013. He explained:
“My children are at the school Sohana went to and we became good friends with her. I wanted to help so I became Patron of the Sohana Research Fund which raises money for stem cell research and gene therapy for kids with the condition.” (Mirror UK, February 22, 2015 updated)
Most recently, Damian named Sohana Collins as the living person he most admires.
In February 2015, Damian made a straightforward explanatory video about recessive dystrophic epidermolysis bullosa (RDEB or EB), interviewing leading research scientist Professor John McGrath of Kings College London. This informative video is found on the website of Sohana Research Fund and is used by the organization at its fundraising events.
Written By GingersnapComments Off on Stick Out Your Tongue at EB – July 5, 2016
Stick out your tongue out at EB because Sohana and other EB kids can’t. Due to blistering and scarring in her mouth, which makes eating painful, Sohana cannot stick out her tongue. She has lived with the pain of EB for all her life and before she turns 14, we are asking you to join our campaign and “Stick out your tongues at EB.” Text CURE to 70300 to give £3 or SOHANA to 70500 to give £5. For more information, visit Sohana Research Fund.
Written By GingersnapComments Off on Damian Interviews Professor John McGrath About EB – Feb 16, 2015
SRF patron Damian Lewis interviews Professor John McGrath from Guy’s and St Thomas’s NHS Trust, Kings College, London to learn more about EB.
Epidermolysis Bullosa is a genetic skin blistering condition that affects over 500,000 people around the world, but very few people have heard of it. Those who have realise what a devastating impact it has on sufferers and their families. It is unrelenting in its pain and unrelenting in the distress it causes. – Sohana Research Foundation