Damian Lewis Comperes Glittering Silver Butterfly Ball In Aid Of Cure EB

The Silver Butterfly Ball of 2024 unfurled its wings in a dazzling display of philanthropy and glamour, all in support of the noble cause championed by Cure EB. The event, graced by the esteemed actor Damian Lewis, a dedicated patron of the foundation, was a testament to the power of collective action in the face of adversity. The ball, held at the prestigious RIBA, was not just an evening of elegance but also a beacon of hope for those affected by Epidermolysis Bullosa (EB), a condition that challenges the very fabric of the skin.

The highlight of the evening was the live auction, an exciting affair where generosity knew no bounds, as attendees bid on exclusive experiences, such as high tea with Damian Lewis at The Ritz London, coveted tickets to Wimbledon, Alfa Romeo drives, a McLaren Factory Tour, a Luxury Villa Holiday, a Signed Daniel Craig Bond Poster, Coldplay's Music Of The Spheres Tour and many more. The silent auction, accessible to supporters worldwide, further amplified the reach of this charitable endeavour.

Damian Lewis's involvement brought a spotlight to the cause, leveraging his platform to raise awareness and funds, embodying the spirit of the Silver Butterfly. The success of the ball was a collective triumph, a night where the community came together, united by the shared vision of a future free from the clutches of EB, and the funds raised took them a step closer to that reality.

Cure EB was founded by Sharmila Nikapota and James Collins, an organisation dedicated to funding research for the treatment and cure of Epidermolysis Bullosa (EB), a rare genetic skin disorder. Their role is multifaceted, encompassing advocacy, fundraising, and increasing public awareness about EB.

Their efforts extend beyond just funding; they are actively involved in guiding the organisation's strategic direction, ensuring that 100% of donations are channelled directly into research. Nikapota and Collins's advocacy has also been highlighted in media outlets, where they have expressed optimism about the potential of gene editing technologies to revolutionise treatment options for EB. Their work is a testament to the power of hope and the relentless pursuit of a world free from the pain of EB. Through Cure EB, Sharmila Nikapota continues to inspire and mobilise resources and support for this noble cause.

Their journey began out of a personal crusade to help their daughter, Sohana, who lives with this painful condition. Sharmila, a Cambridge-educated veterinarian, shifted her focus from animal health to human genetics and advocacy, channeling her scientific background into the fight against EB. Collins, a barrister and King's Counsel since 1012, is primarily responsible for financial management, legal and compliance.

Their work involves not only fundraising but also raising awareness about the condition, which is characterised by extremely fragile skin that blisters and tears from minor friction or trauma. The couple's dedication has been instrumental in propelling forward groundbreaking research, including gene editing technologies that hold promise for treating EB. They have built a team of trustees, volunteers, and support staff, who volunteer their time for free.

Their efforts have been recognised and featured in various media outlets, including a detailed account of their personal story and the inception of Cure EB in The Guardian and The Times. Through their leadership, Cure EB has become a beacon of hope for many families, driving forward the possibility of medical breakthroughs that could one day eradicate the suffering caused by EB. Their unwavering commitment exemplifies the profound impact that dedicated individuals can have on advancing medical science and providing hope to those in need.

Damian Lewis's commitment to Cure EB is a profound demonstration of his dedication to making a difference in the world. As a proud patron of the foundation, Lewis has been instrumental in raising both awareness and funds for Epidermolysis Bullosa (EB). His involvement goes beyond mere endorsement; he actively engages in fundraising initiatives, such as hosting the biannual Silver Butterfly Dinner, which has become a cornerstone event for the charity. At these events, Lewis doesn't just lend his name; he is present, interacting with guests, and driving the auction.

Lewis's advocacy for Cure EB has seen him take to the stage at various events, including a memorable talk at the House of Lords, where he highlighted the importance of research and support for those living with EB. His efforts have significantly boosted the charity's profile, drawing attention to the 'butterfly children' who live with this condition daily. His voice has been a catalyst for change, inspiring others to join the cause and contribute to the ongoing research that aims to find a cure.

Cure EB's relentless pursuit of a cure for Epidermolysis Bullosa (EB) is fuelled by a diverse portfolio of research initiatives, each meticulously designed to unravel the complexities of this debilitating condition. At the heart of their mission lies the commitment to translational research projects and early phase clinical trials, which serve as critical pathways to bring scientific discoveries from the laboratory bench to the bedside of those in need.

The organisation's strategic approach to research encompasses a multifaceted battle against EB, targeting not just one, but all types of this condition. This includes funding gene therapy and gene editing projects, which aim to correct the genetic faults at the core of EB. These cutting-edge techniques involve either replacing or adding new genes to restore normal function, or editing the DNA itself to rectify the underlying genetic errors.

Cell therapy is another cornerstone of Cure EB's research funding, where the transplantation of healthy human cells is explored to repair or replace the damaged tissue in EB patients. This innovative treatment has the potential to provide significant relief and improve the quality of life for those affected.

Drug therapy, a more traditional yet equally important area of research, is also supported by Cure EB. This involves the administration of drugs to treat or slow the progression of EB, providing an immediate impact on the patients' well-being while the search for a cure continues.

Protein therapy represents another promising avenue, where functional proteins, which are missing or faulty in individuals with EB, are supplied to alleviate the symptoms. This therapeutic strategy could offer a reprieve from the daily struggles faced by those with EB.

Furthermore, Cure EB recognises the heightened risk of squamous cell carcinoma (SCC) in patients with certain types of EB and funds research specifically aimed at EB cancer therapy. This targeted approach reflects the organisation's dedication to addressing all aspects of the condition, leaving no stone unturned in their quest for a cure.

The impact of Cure EB's funding is evident in the tangible progress made over the years, raising over £10 million in 10 years,Their support has led to the initiation of 24 projects, including four clinical trials, all of which hold the promise of bringing us closer to a world free from EB. These have been instrumental in driving forward innovative projects that correct genetic faults and bring interim treatments to those who suffer from this condition.

Cure EB's research funding is a beacon of hope, illuminating the path to a cure with every project they support. Their unwavering dedication to the cause, coupled with the generosity of their donors, ensures that the flame of research burns bright, offering a glimmer of hope to the 'butterfly children' and their families. As they continue to fund the fight against EB, Cure EB stands as a testament to the power of focused philanthropy and the enduring spirit of human resilience.

Cure EB are incredibly grateful to everyone who attended, made a pledge or took part in the auction. Donations are still coming in but so far they have raised a brilliant £585,000 to fund the research projects.

During the auction, one heroic guest stood up and personally promised to double all financial contributions made that night, which spurred everyone on to donate even more generously.

The Excellence Group and International Excellence Magazine would also like to thank Alfa Romeo for their contribution of two cars, the Alfa Romeo Giulia Quadrifoglio and the Alfa Romeo Stelvio Quadrifoglio for the auction as well as McLaren and Jardines for their McLaren Technology Centre visit.

Video here: https://www.youtube.com/watch?v=rWbN9vz49-Q

https://cars.mclaren.com/gb-en/experiences
https://www.alfaromeo.co.uk

To learn more about Cure EB and contribute please visit
https://cure-eb.org/

International Excellence would also like to thank Debbi Clark, a trustee of Cure Eb, for the photographs.
http://www.debbiclark.com