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At the 20th Annual WORLD Symposium in San Diego this February, the global spotlight shone on Alan Finglas as he was presented with the prestigious Patient Advocate Leader Award. The symposium, renowned for its focus on lysosomal storage diseases (LSDs), brought together over 2000 participants from 50 countries for 96 presentations and 450 poster presentations from researchers worldwide.

Alan Finglas, alongside his wife Michelle, embarked on a journey to advocate for those affected by multiple sulfatase deficiency (MSD) after their son Dylan’s diagnosis in 2015. At that time, there was no dedicated charity pursuing research on MSD anywhere in the world. Alan is known for his sheer determination, practical mindset, fundraising abilities, strategic planning, his ability to help secure grants, and being able to discover and foster collaborations. MSD Action Foundation & have been pivotal in reshaping the landscape of MSD research.

Receiving this award is one of the greatest honours of my life. Part of it belongs to the MSD researchers, the MSD patient families around the world that helped to make an impact on MSD so far and those that donated to the cause,”

Alan Finglas remarked.

As part of his work with REMEDi4ALL, Alan was instrumental in establishing a cooperative effort with AbbVie to further clinical research on tazarotene as a potential treatment option for MSD. This project involving Fraunhofer ITMP, University Medical Center Göttingen and EATRIS will benefit greatly from access granted by AbbVie to critical efficacy, safety and clinical development data on a formulation of tazarotene suitable for treating MSD patients.

Dr. Lars Schlotawa, Paediatrician/Consultant for Paediatrics at the University Medical Centre Göttingen and REMEDi4ALL Partner, praised Alan’s dedication, stating, “Alan’s tireless advocacy has propelled MSD research forward, offering hope to countless families worldwide. MSD is no longer the ultra-rare, forgotten disease because Alan put MSD onto big global stages.

Donald Lo, REMEDi4ALL Scientific Lead and EATRIS Director of Medicines Development added: “We have been honoured and gratified to have the opportunity to work with Alan. He has been an integral part of our tazarotene repurposing development team and played a pivotal role in every aspect of this core REMEDi4ALL project—we couldn’t have gotten as far as we have without Alan’s incredible efforts and contributions.”

The 2024 Patient Advocate Leader Award was presented at 7:30 AM PST on Tuesday 6th February 2024, at the 20th annual WORLDSymposium in San Diego, California. A video tribute has been released, capturing Alan’s unwavering spirit and the impact of his advocacy efforts. You can watch the video here including his acceptance speech at the end.

Left image: the REMEDi4ALL delegation at WORLDSymposium 2024, including Alan Finglas, Lars Schlotawa, and Donald Lo. Right image: MSD researchers at WORLDSymposium 2024.

About MSD Action Foundation /
MSD Action Foundation’s & are one in the same body whose main goal is: ‘To promote and support research advancements that will lead to positive clinical outcomes, and quality of life, for patients suffering from Multiple Sulfatase Deficiency’. They were the first ever dedicated patient organisation advocating for MSD when they were established in 2015. The goals of the foundation are to support translational research in order to further breakthroughs in MSD research, to create more public awareness of MSD, and to act as a voluntary support and information exchange network for those affected by MSD and their families. Find out more here:

REMEDi4ALL is an EU-funded research initiative that is driving forward the repurposing of medicines in Europe. The project is expected to make a major leap forward in drug repurposing, or finding new therapeutic options for existing drugs, in areas where there are high unmet medical needs. It is a 5-year, €25M Horizon Europe project that aims to develop an innovation platform supporting promising, high impact drug repurposing projects championed by patients in any phase of development and disease area. A global community will be established that contributes to informing and shaping policy and advancing debate and knowledge exchange worldwide. The multidisciplinary consortium involves 24 European organisations, led by EATRIS, with the common goal of making cost-effective repurposed medicines more widely available. University Medical Centre Göttingen as one of the world leading centres for MSD research and patient care is a partner of REMEDi4ALL. Find out more here:   

EATRIS is the European Infrastructure for Translational Medicine. It’s a non-profit organisation that brings together resources and services for research communities to translate scientific discoveries into benefits for patients. Users are given access to a vast array of expertise and facilities from over 150 top-tier academic centres across Europe. EATRIS focuses on improving and optimising preclinical and early clinical development of drugs, vaccines and diagnostics, and overcoming barriers to health innovation. Find out more about EATRIS here:   

About The University Medical Center Göttingen (UMG)
The University Medical Center Göttingen (UMG) is one of the leading university medical institutions in Germany. With funding allocated by the state of Lower Saxony and third-party funding, UMG conducts research at the highest level and is one of the largest medical faculties in Germany, based on the number of students enrolled. The Medical Faculty is as old as the University itself, founded in 1737. The UMG has a long-standing record in MSD research. The underlying genetic defect of MSD was discovered here and since then research towards a therapy for MSD has been an integral part of the scientific activities at UMG. UMG’s Department for Paediatrics and Adolescent Medicine serves as one of a few leading expert centres for diagnosis, treatment and care of MSD patients worldwide. Find out more here:

Find out more about the 20th Annual WORLDSymposium here:

See the official press release about the award here:

For further information, please contact:
Dr Jake Fairnie, EATRIS Head of Communications,