Weekly Spotlight - 26.09.24

Information on symptom management, ensuring proper documentation, and advancing treatment options.

Author

Liam Ball
September 26, 2024

In The News

Carlos Briceo's column addresses a critical issue for families affected by Huntington's disease (HD): preventing the mistaken arrest of loved ones whose symptoms may mimic intoxication. His wife, Jill, who is gene-positive for HD, experiences symptoms such as involuntary movements, unsteady gait, and slurred speech, which can be misinterpreted by those unfamiliar with the disease. This misunderstanding can lead to dangerous encounters with law enforcement.

Briceo recounts a poignant conversation with Alan A. Pfeffer, a lawyer and former advocacy chairman of the Albany chapter of the Huntington's Disease Society of America (HDSA). Pfeffer's personal tragedy—losing his first wife and daughter, Charise, to HD—underscores the urgency of educating police about the disease. In 2015, Charise was mistaken for being drunk, but thanks to Pfeffer's prior training sessions with local police, the responding officer recognised her condition, averting a wrongful arrest.

Pfeffer emphasises the importance of proactive measures: wearing identification jewellery and engaging with local police departments. He shares his strategy of collaborating with the county district attorney and using the HDSA Law Enforcement Toolkit to educate officers. This training includes detailed presentations and personal stories, highlighting the severe risks HD patients face if misinterpreted as intoxicated or non-compliant.

Briceo's column is a heartfelt call to action, urging families to take preventive steps and work with law enforcement to ensure the safety and dignity of those living with Huntington's disease.

Clinical trial records cannot be used for disability claims as they are proprietary and inaccessible. For Huntington's disease patients, relying solely on clinical trials means lacking necessary medical records. Regular clinical care is essential alongside trial participation to ensure a strong medical record for disability claims.

Latest in Research

Skyhawk Therapeutics will present positive Phase 1 trial data for SKY-0515 at the European Huntington's Disease Network and Enroll-HD 2024. SKY-0515 showed a 72% reduction in HTT mRNA and was well tolerated. Part C of the trial is now enrolling patients, with results expected in Q2 2025.

The European Medicines Agency is reviewing Prilenia Therapeutics' application for pridopidine, an oral therapy for Huntington's disease. Pridopidine has shown potential to slow disease progression with a favourable safety profile. Approval could come by late 2025, offering hope to patients and their families.

Events Spotlight

LOHA Health offers an online family course to help parents and children discuss Huntington's disease and manage emotional wellbeing. The six-week programme includes weekly activities and group calls with a therapeutic coach. It aims to foster healthy relationships and provide practical tools for emotional management.

The Huntington's Disease Association offers an online study session for care staff on 25 September 2024. This session provides an overview of Huntington's disease, its symptoms, and support strategies. Aimed at professionals, it includes a Q&A segment and lasts 90 minutes. The association supports those affected by Huntington's disease.

The Huntington's Disease Community Conference and AGM 2024 will be held on 26-27 October at Crewe Hall Hotel & Spa. The event features expert speakers, research updates, and personal stories. Attendees can join interactive workshops and social activities. Special arrangements are available for children and young people.

Health Spotlight’s Huntington’s Disease is a Contentive publication in the Healthcare division