Seasons Greetings

London – Dec 2024

Dear Donors & Partners,

A progressive year not just for the foundation but for the SCD cause in general and we thank the scientific community, our donors, partners and well-wishers for the continued support.

Scientific Breakthrough
Casgevy – the first commercial drug using genome editing technology was approved for the cure of SCD

Lyfgenia – a one-time gene therapy to treat sickle cell disease in patients 12 years of age or older and a history of vaso-occlusive events also approved in 2024

The Pipeline
There are 2 very promising therapies currently undergoing clinical trials and aimed at reducing the complexity of delivery and cost.
a) AND017 might not only provide a novel oral treatment with unique mechanism of action superior to Hydroxyurea and L-glutamine (Kind Pharmaceutic)
b) The correction of sickle mutation with one-time intravenous administration in vivo, without the need for complex stem cell mobilization or toxic chemotherapy conditioning (Tessera Therapeutics)

Amoke Foundation USA Fund
In partnership with Myriad USA, the Amoke Foundation USA Fund was established during the year. This opens the opportunity for US based donors to make tax deductible contributions. Donations are accepted in Cash, Crypto, Stocks, Donor Advised Funds (DAFpay), Venmo and Gift https://www.every.org/amoke-scd-ltd

Amoke Animation Videos
The first of a series of animation videos was created and will be launched in the new year. A series of educational and awareness videos will be generated as part of the marketing / PR drive and enhance website visuals.

Nigeria – Progress Report
• Amoke donated a TCD machine to Lagos State University Teaching Hospital (LASUTH) to continue our stroke prevention project in Nigeria and complement the unit at Ekiti State University Teaching Hospital (ESUTH) which was established in 2022.      https://www.instagram.com/p/DAblzSKuYPq/?igsh=MWkwNHBleWFjZGN2eA==
• The PMH @ UCH Ibadan continues to provide a valuable service to the SCD patient population in the community. However, a decision was made to scale down operations due to the shortage of junior doctors managing the unit.
• A new pain management hub (PMH) was established in Lagos in addition to a surgical arthroplasty hub (SAH) in the same city. I am glad to report that the SAH recently completed its first bilateral hip replacement for one of our SCD patients successfully.

Fundraising
Amoke Charity Ball – a successful inaugural fundraiser was held in May 2024. It was well attended and raised lots of cash and gifts in kind….most importantly we had tons of fun!

Future
• Revamp our social media presence to improve content generation and audience engagement. Create individual personal fundraising pages to request medical assistance for our patients.
• Jazz Brunch – Summer 2025

We are extremely grateful for your support over the past 12 months as, our staff have sought to navigate the changing landscape whilst keeping our focus on the key objective – to Live Well with Sickle Cell.

Have a wonderful festive season!
Trustees

Letter from the Trustees 2024

click to read doc and play the animation video

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