Lee Reavy’s rare disease journey began in 2006 when his son, Callum, was born.
Right from the start, Lee and his wife noticed something wasn’t quite right – Callum was small and had distinctive facial features.
Later the next year, after a visit to Great Ormond Street Hospital (GOSH), Callum was clinically diagnosed with Nicolaides Baraitser Syndrome (NCBRS), becoming only the seventh known case globally. This marked the beginning of their involvement in the rare disease community.
In 2010, alongside his wife, Lee founded a UK support group for families affected by NCBRS.
By 2020, their numbers significantly increased and alongside another parent, they co-founded the NCBRS Worldwide Foundation, a registered charity dedicated to supporting individuals affected by NCBRS worldwide.
However, this journey was not without its challenges. They faced numerous obstacles including event planning, implementing a Customer Relationship Management (CRM) system, and recruiting trustees.
How has Beacon supported you?
“Beacon has been instrumental in helping us navigate these challenges.
Our first interaction with Beacon was in 2022 when we participated in their Rare Showcase event. They generously provided us with a virtual stand free of charge, offering a valuable platform to promote our cause and raise awareness about NCBRS.
Since that initial engagement, we have continued to benefit from Beacon’s programs. We participated in their “Recruiting a Rare Board” program, which was a resounding success—resulting in over 15 applications for trustee positions.
Additionally, we completed a year-long patient group mentoring program offered by Beacon. This program was crucial in helping us address and overcome many of the operational challenges we faced, such as event planning and CRM implementation.
The support and resources provided by Beacon have been pivotal in our growth and development. Their staff’s expertise and dedication have enabled us to reach new heights and expand our impact.
Without Beacon’s programs and support, our progress would have been significantly slower and more difficult. We are immensely grateful to Beacon for their invaluable assistance and for the tremendous support they provide to numerous rare disease groups.
Beacon’s contributions have been a cornerstone of our success, allowing the NCBRS Worldwide Foundation to flourish and better serve those affected by Nicolaides Baraitser Syndrome. Their commitment to empowering rare disease groups is making a profound difference, and we look forward to continuing our partnership with them in the future.”
Well done to Lee, and the NCBRS Worldwide Foundation Team. We can’t wait to see what you achieve next!