Did you know? January is Mental Wellness Month
Living with Von Hippel–Lindau (VHL) disease can involve moments of uncertainty, difficult decisions, and a wide range of emotions. During Mental Wellness Month, we are highlighting the importance of caring for your emotional well-being as part of your overall health.
Mental wellness plays a central role in how we cope, how we connect with others, and how we move through the challenges of VHL. This month offers a reminder to slow down and recognize what helps you feel steady and supported!
The Importance of Self-Care and Community Support
Self-care looks different for everyone. It may involve rest, journaling, gentle movement, or simply taking time to breathe. For many people in the VHL community, support also comes from talking with others who understand the experience of living with a genetic condition that affects many parts of life.
Living with VHL can bring uncertainty and emotional ups and downs. It’s normal to experience feelings such as anxiety, frustration, grief, or fatigue along the way. Acknowledging these emotions, without judgment, is an important part of caring for mental health.
Having a positive support system can make difficult moments easier to navigate. It can also help strengthen resilience and reduce feelings of isolation. Connecting with patient communities, peer support groups, or trusted loved ones can remind individuals that they are not alone and that their experiences are valid.
Self-care and community support are essential parts of managing a lifelong condition. Sometimes, even small acts of self-care, especially when shared with others, can go a long way.
Monthly Support Calls
Our monthly virtual support calls give patients, caregivers, and families a chance to share their experience and receive encouragement from others who understand life with VHL.
- Patient and Caregiver Support Call on the first Monday of every month
- Low or No Vision Support Call on the second Wednesday of every month
“These calls provide an opportunity to talk openly about challenges, celebrate small victories, and exchange practical coping strategies in a safe, supportive environment. Whether you’re newly diagnosed, have been navigating VHL for years, or support a loved one with VHL, you are welcome. These conversations can help reduce feelings of isolation and serve as a reminder that you’re not alone on this journey. One recent participant described the monthly call as a “family,” reflecting on both the shared genetic connection of VHL and the sense of belonging created when people come together with understanding and care. We invite you to be part of the family.”
– Devon Ciampa, Patient and Caregiver Support Call Moderator
You can sign up for the February support calls here: https://vhl.app.neoncrm.com/forms/monthly-call-subscription-form
One-on-One Wellness Coaching
VHLA’s Wellness Coaching program will give you the tools and techniques that will reduce stress, create ease, boost resilience and help increase the feeling of control.
The program includes 11 modules of the VHL Wellness Coaching program includes videos and practical tools to use along with supplemental learning suggestions if you want to dive a bit deeper.
In addition, you get four coaching sessions with a certified coach, who is experienced in working with VHL patients and caregivers, and is also a patient and caregiver herself, to support you and whatever you might be struggling with. Sign up here: https://vhl.org/care-treatment/wellness-coaching/
In-Person Events
There is nothing like an in-person connection for supporting mental health. We are pleased to share that VHL Family Weekend 2026 will take place from August 7-9 in Los Angeles, California, in partnership with the UCLA Clinical Care Center team. Family Weekend is consistently one of the most impactful events of the year – Registration links and details to come soon!
Leaning on Clinical Care Centers
Medical care plays a major role in emotional well-being. VHL Clinical Care Centers across the country are staffed by experts who understand VHL and can help guide patients through treatment decisions, symptom management, care coordination, and overall support. Building a trusted relationship with a clinical care team can reduce stress and help patients feel more confident and informed. Find the Clinical Care Center nearest to you: https://vhl.org/care-treatment/clinical-care-centers/
You Are Part of a Community
We get it – The VHL journey can be complicated. Our programs, care network, and community spaces are here to support you whenever you need them.
As the new year begins, we encourage you to take time for your mental wellness and reach out if you could benefit from community, guidance, or a listening ear. You can get in touch with our team at [email protected] to learn more!
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