We had an absolute record number of questions (and topics) sent in!

The Forum was moderated by Professor Ruth Walker (Mount Sinai, New York) and featured a panel of experts:

• Dr Julie Kerner – drug developer and NA Advocacy USA board member
• Dr Elina Tripoliti – speech and language therapist, University College London
• Dr Alzbeta Mühlbäck – psychiatrist, Klinikum Taufkirchen, Germany.

Together, they provided practical insights, research updates, and helpful tips on topics including:

• genetic testing and counselling
• swallowing, speech, and dystonia therapies
• cognitive and behavioural symptoms
• nutrition and digestive concerns
• non-traditional therapies like EMST and CBD 
• research progress, from mouse models to AI and clinical trials.

Highlights included advice on managing injections, speech exercises (jam on the palate, anyone?), and tools like the EMST150 for strengthening muscles used in swallowing and speaking. Don’t know what we’re on about? Check out the full report (pdf format) which explain all the acronyms and medical terms! 

The discussion also shed light on emotional wellbeing, executive functioning, and the benefits and challenges of collecting long-term patient data to guide research.

Looking ahead, the 12th International Meeting on Neuroacanthocytosis Syndromes, Cohen Syndrome and VPS13-related disorders will be held between 12 and 14 September 2025 in Lausanne, Switzerland. You can read more information here.  We hope to see you there! 

And of course, see you at the 22^nd VPS13 Forum on 28 July 2025 from 13:00 BST (GMT+1 or check your local time). The topic is “Novel functions of VPS13 and XK proteins” and there will be lots of scientific presentations. 

If you can’t attend or looking to read a simpler version of the meeting, we’ll publish the report as soon as possible after the meeting. Find past reports in our archive: naadvocacy.org/research-forum/ Please like and share our social media posts about these, it helps us enormously to spread the word far and wide!

Thank you to everyone who sent in questions and joined us for this deeply engaging session. Forums like these show the strength and heart of our community, and remind us why we keep searching for clues to a cure.