Written By GingersnapComments Off on Funding Freedom from EB – July 8, 2020
Damian plus Sohana and her family explain what funding research means to families living with Epidermolysis Bullosa. With treatment trials started there is a real chance to improve the lives of children who are really suffering.
Please visit Cure EB.org here or their Just Giving page here.
Cure EB (formerly Sohana Research Fund) exists to treat and cure epidermolysis bullosa an inherited genetic skin condition that leads to blistering and skin loss with the mildest trauma. It is “Hard to say. Hell to live with” and children and adults with the condition live in constant pain associated with the burn like wounds that occur. The intense pain and repeated damage leads to progressive disability and severe forms are life shortening due to a particularly aggressive skin cancer that develops in early adult hood. EB children and adults have tremendous courage and resilience which helps them cope with the unremitting pain – but what they want most is to have what most of us take for granted – a pain free life.
Written By GingersnapComments Off on Giving Tuesday – Nov 27, 2018
Cure EB: The Big Give Christmas Challenge
by Damianista | Fan Fun with Damian Lewis | November 27, 2018
Today is Giving Tuesday! It is a a global day of giving we celebrate on the Tuesday after Thanksgiving and kick off the charitable season! So it’s time to be thankful for all the good stuff in our lives and focus on our holiday giving.
Well, most of you know Damian Lewis is a proud patron of Cure EB.
Damian Lewis with Sohana and her mother Sharmila at BGC Charity Day 2014, source: Sohana Research Fund
Sohana Collins is a 15 year old teenager who was born with Recessive Dystropic Epidermolysis Bullosa (RDEB) which means she lacks the protein that holds her skin together. Kids with RDEB have extremely fragile skin that they are sometimes called “butterfly children.” Lots of activities we take for granted as easy routines in our daily lives are a struggle for them. Can you imagine a day where your dressing up takes up to two hours and eating and drinking cause blisters in your mouth and throat? These kids have to deal with this kind of pain every single day. Besides, they are under extra risk to develop skin cancer later in life and their life expectancy is not very long. Sohana’s parents Sharmila and James Collins founded Cure EB to raise awareness as well as funds for research to ultimately have a cure for this terrible skin condition.
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.