2023 was a very busy, productive and eventful year as the KDA continues to focus on and strive to find a cure for Kennedy's Disease. Below is a snapshot of some of the year highlights.
KDA Awards $437,000.00 In Research Grants For 2023
The KDA awards $437,000 in research grants in 2023. As of October 2023, the KDA has awarded $2,453,617.00 in research grants to help find a cure or treatment for Kennedy's Disease. Click here to learn about KDA grant awards.
The First-In-Patient Trial of a Drug to Treat Kennedy’s Disease
In 2023, AnnJi Tests AJ201 on its first patient for the KD clinical trial. Avenue Therapeutics and AnnJi were excited to announce that the first patient was dosed in the clinical trial of AJ201. There were six AnnJi drug trial distribution sites set up to distribute the drug. For more information about the drug, click here
Nido Biosciences announced the development of NIDO-361
Nido Biosciences, a Boston-based company specializing in precision treatments for neurological diseases, announced the development of NIDO-361, a clinical stage therapeutic targeting the gene mutation that causes Kennedy’s disease (Spinal and Bulbar Muscular Atrophy, or SBMA). NIDO-361 is based on original research by Dr. J. Paul Taylor of St. Jude Children’s Research Hospital and a former member of KDA’s Scientific Review Board. To read more, click here.
11th Annual KD Golf Scramble – April 22, 2023
The 11th annual KD Golf Scramble was held on April 22 with great success. It was fun for all and the scramble raised a yearly high donation amount of around $43 thousand dollars to help find a cure for Kennedy's disease. Over the past 11 years. The KD Golf Scramble has raised over $343,000 dollars for research to find a cure for Kennedy’s Disease. The goal of our 11th annual tournament was to not only provide much-needed funds to help find a cure for Kennedy’s Disease, but also to raise awareness of the disease and give HOPE to anyone affected by it that we WILL find a cure. To learn more about the KD Golf Scramble and view photos, click here.
The KDA held its First KD Banbury Conference in September.
The KDA tried a new approach to researcher collaboration. In September, the KDA held its first Banbury Conference. Researchers from around the world gathered at the Banbury Center to stimulate additional research into the mechanisms of SBMA pathology, and to identify potential therapeutic approaches. A key goal of the workshop was to invite fresh perspectives from research experts with a diversity of backgrounds and to encourage new collaborations among scientists leading to new areas of SBMA research and/or therapy development. Banbury Center in New York is a gathering spot for scientific think tanks. “The meetings are recognized internationally as being amongst the world’s best discussion workshops for topics in molecular biology, molecular genetics, human genetics, neuroscience and science policy.”
The KDA Joins KD-UK in London for a Kennedy's Disease Conference
The Kennedy's Disease Association and KD-UK sponsored the London International Conference on Kennedy's Disease in London. This Kennedy's Disease conference was held in November at the Bloomsbury Event Venue in London. The first two days of the conference were focused on people living with Kennedy Disease, carriers, carers and for people wishing to learn more about the disease. The second two days were predominately aimed at researchers, clinicians and scientists.
The KDA develops Short KD Reference Guides
The KDA has started to develop a series of short (1-2 page) reference guides on different aspects of KD including symptoms and management approaches. These documents will provide information to patients as well as medical personnel who may not be familiar with KD. To access these guides, click here.
The French national protocol for Kennedy’s disease (SBMA) is Published
The Kennedy’s Disease Association Board of Directors & Scientific Review Board encourages clinicians to consult ’s disease (SBMA) for guidance on diagnosis and management of Kennedy’s Disease (KD). To read the document, click here.
Kennedy's Disease/SBMA Voice of the Patient Report is Published
This report is based on the “Patient-Focused Drug Development (PFDD)” meeting held at the KDA 2022 conference and related patient input. Voice of the Patient reports are used by the U.S. Food and Drug Administration as an important source of information used to evaluate clinical trial results. To read the report, click here.
The KDA Supports Gordon Conference on CAG Repeat Diseases
Support for research and education on Kennedy’s Disease (SBMA) are the main functions of the KDA. This year, in addition to funding our annual grants and fellowships programs, KDA provided $5,000 for scholarships to allow researchers to attend the 2023 Gordon Conference on “CAG Triplet Repeat Disorders” to be held in June in Vermont. This conference is part of the Gordon Research Conferences, an internationally recognized program for scientists to present and discuss new research in many fields. The Vermont conference will focus on SBMA in addition to related, CAG repeat diseases such as Huntington’s disease, the spinocerebellar ataxias 1, 2, 3, 6, 7, 12 and 17, and dentatorubral-pallidoluysian atrophy. Conference attendees will hear presentations from senior SBMA researchers and have a chance to participate in discussions about potential treatments.
The KDA works with Firespring
The Kennedy's Disease Association selected and decided to work with Firespring to enrich its IT focus, transition its website and to grow. Firespring provides strategic guidance activated through creative, marketing, printing and technology solutions to help businesses and nonprofits prosper. You can learn more about the company Firespring by clicking here.
The KDA Board adds new members and says good bye to a friend
The KDA board make up went through some unforeseen changes in 2023. First, the board had to say goodbye to a friend and long time board member, David Yelton, who served as treasurer of the KDA. David passed away in late 2023.
On a positive note, the board was able to add two new board members. Joan Sorensen and Randy Soo Hoo. Both joined the KDA board in 2023.