There are several ongoing studies that need participation from patients and caregivers, and your involvement can help accelerate vital research. By joining these studies, you can play a crucial role in shaping the future of treatments and care for our community. 

AVP-D/Diabetes Insipidus Survey
Whether you are a patient with AVP-D/DI or a caregiver, you can help inform physicians and support organizations to improve care. This survey is open for participation through August 23. The survey is sponsored by the “Got Diabetes Insipidus or AVP- Deficiency?” Facebook Group, The World Alliance of Pituitary Organizations (WAPO), The Histiocytosis Association. Advisor: Dr. Cihan Atilla, Neuroendocrinologist, Basel University, Switzerland. Available in English, Spanish and Portuguese.

Measuring Quality of Life in Adult Patients Who Had a Surgery for a Craniopharyngioma
Johns Hopkins University Neuro-Oncology Surgical Outcomes Laboratory is studying the quality of life in adult patients who had surgery for a craniopharyngioma. If you are at least 18 years old, please take a 10-minute survey to help rate items affecting your quality of life during care. 

Cognitive Behavioral Therapy for Insomnia
The Massey Cancer Center at VCU is looking for adults diagnosed with a primary brain tumor who are experiencing sleep difficulties to participate in a new study on Cognitive Behavioral Therapy for Insomnia (CBT-I). Participants will be randomized to either CBT-I or enhanced treatment as usual. CBT-I involves six weekly virtual group sessions, cognitive testing, sleep diaries, and more. You must be at least 18 years old and able to attend virtual sessions. If interested, please call (804) 628-6799 or email livenow@vcu.edu to check your eligibility.

Newly Diagnosed Mentorship 
Navigating a new diagnosis can be overwhelming, but you don’t have to do it alone. Our Newly Diagnosed Mentorship Program pairs newly diagnosed patients and their families with experienced mentors who provide guidance, support, and firsthand knowledge. These mentors understand the journey and are here to help you through every step, offering insights and encouragement. Connect with someone who has been there and can offer invaluable support during this challenging time. For more information, email outreach@rawoodfoundation.org.

Caregiver and Survivor Support Groups
Our support groups provide a safe and welcoming space for both survivors and caregivers to connect and share their experiences. The Survivor Support Group meets on the second Saturday of every month, offering a platform for survivors to discuss their challenges, triumphs, and strategies for living well. Meanwhile, the Caregiver Support Group meets on the second Tuesday of each month, providing caregivers with the opportunity to share their stories, seek advice, and find comfort in a community that understands the unique demands of caregiving. Join us to find support, encouragement, and friendship among those who truly understand. For more information, visit the events section of our website.

Coming Soon! Teen Support Group
We are excited to announce the launch of our Teen Support Group, designed specifically for teenagers navigating the unique challenges of living with a hypothalamic-pituitary brain tumor. This group will provide a safe and supportive environment for teens to connect, share their experiences, and build friendships with others who understand their journey. Stay tuned for more details, and if you’re interested in joining, please email outreach@rawoodfoundation.org  to receive updates and information about the first meeting.

We hope you will make plans to join us next year as patients, families, caregivers, and healthcare professionals come together to explore critical topics and build connections within our community. The conference will feature the latest advancements in tumor treatment, strategies for managing endocrine issues, insights on hypothalamic obesity, social and emotional challenges, and effective care management. With expert-led sessions, interactive discussions, and networking opportunities, this event promises to educate, inspire, and unite us all. For more information, visit www.rawoodfoundation.org/annual-conference and join our conference Facebook Group for updates on the event and to weigh in on the agenda.

Meet Josh Begley, who is taking on his first triathlon this November!
Josh, a professional chef in South Carolina, is training for his first triathlon and will be competing in honor of his brother, Matt, a brave survivor of craniopharyngioma, while raising funds for the Raymond A. Wood Foundation. We invited our community to cheer Josh on. Find out more and support Josh!

Feeling inspired? You too can make a difference! Consider starting your own fundraising event in support of the Raymond A. Wood Foundation. Every effort helps us get closer to improving the lives of brain tumor survivors. Find out how you can help.

Your experiences and insights are invaluable to our community. Together, we continue to make strides in supporting and empowering those affected by hypothalamic-pituitary brain tumors. Thank you for being an essential part of our journey.