People in our community have reached out to Help 4 HD requesting a different type of support, and we are excited to announce that we have started a new type of flexible support space. Here are some details:
Private support space for people who identify as at-risk (not tested) or gene positive AND pre-symptomatic, prodromal, or very early symptoms.
No need for an official diagnosis or verification - Participation in this group can be based on your perception/interpretation of your own experience.
No official age range.
Topics and discussions will be geared towards future life planning and the overall impact of HD on your life, such as childbearing, caregiving, career and educational decisions, legal planning, financial planning, emotional and psychological impact, etc.
Frequent discussions around research participation for people who are pre-symptomatic, prodromal, or very early stages and barriers to access for this population.
Join the Help 4 HD PPEM Facebook Messenger Group for casual involvement and invitations to support groups, virtual discussions, etc.
Join the Voxer group if you want to participate more regularly, control your intake/exposure to these topics, or act as an ambassador for this population by helping designate topics for discussion, scheduling support groups, and potentially interacting with pharma.
Voxer offers encrypted messaging and is completely separate from social media so that anyone can join from the app or website for free.
Once you've created your free account, search for Anna by email at anna@help4hd.org and message her to join the group.
You can also email her directly for a link to join the group.
We will build community on both platforms, so your level of participation is entirely up to you. You can ebb and flow between them as needed.
Both spaces will be facilitated by Anna Lunsford, who identifies as part of this specific population, has a master's degree in Social Work, and 10 years of experience helping facilitate similar groups. Katie Jackson and Katrina Hamel will have access to the group in case of emergencies.
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