Navigating a rare disease is often challenging and overwhelming. Whether you are a parent, sibling, grandparent, spouse, the individual directly living with Krabbe disease, or you fulfill another special role, each person often experiences feelings of isolation, stress, and anxiety for themselves or for the special person living with ongoing health challenges.
Whatever your role in the Krabbe disease journey, we have a team of volunteers ready to help ease the burden of this disease. Studies have proven that individuals who participate in a mentoring program find comfort in comparing notes, discussing illness experiences, sharing coping mechanisms, disclosing valuable resources, and more. We invite you to let us ease the burden of this disease by connecting you with an individual who is kind, non-judgmental, and experienced in the Krabbe disease journey.
Meet Our Volunteer Peer Mentors
Kevin Cushman as the Palliative and Supportive Care Family Mentor
Kevin Cushman is our peer mentor for families who are dealing with loved ones who currently have Krabbe disease and are not eligible for any current treatments or whose loved ones have lost their battle with Krabbe disease. Kevin can aid patients and caregivers with their journey, offer information on lessons learned, provide you with contact information to the leading Krabbe disease clinicians, as well as engage in meaningful conversations about:
- The initial shock; never heard of the disease until now
- Medical equipment
- Impact of the disease on a family
Kevin is the parent of Collin Cushman, diagnosed with Krabbe disease at 13 months of age. We invite you to read his full Krabbe disease story here.
Mary Meisner as the Grandparent Mentor
Mary is well-versed in navigating a grandchild with Krabbe disease. Grandparents are often challenged with a dual role of supporting both their adult child and their grandchild presenting an overwhelming scenario on how to be supportive. Grandparents also have the burden of managing their own emotions of the diagnosis, finding themselves in unchartered situations.
Mary has more than 20 years of experience and is actively engaging with other grandparents to further understand each grandparent’s unique challenges and stories. Mary is the grandmother of Belle, who was diagnosed with Krabbe disease at 15 months and transplanted at 17 months. We invite you to read her full Krabbe disease story here.
Anne Rugari as the Treated Family Mentor
Anne Rugari comes with many years of experience in Krabbe disease. She is a great resource for the following families or patients:
- Newly diagnosed and looking to understand all current options to treat Krabbe disease
- Considering a clinical trial as a treatment for Krabbe disease
- Those who have been through transplant or are considering transplantation for their loved one diagnosed with Krabbe disease
- Looking to simply connect with others who have been through the transplant experience
Anne Rugari is the mother of two Krabbe children, Nick, and Gina. Nick lived to be a year old, and Gina was transplanted as a newborn. We invite you to read her full Krabbe disease story here.
Our hope is that our mentors will assist you in having informed and purposeful conversations with your healthcare provider or aid in uncovering useful resources in your area. Our goal is to create a safe space in which you can interact and seek support knowing that you’re interacting with someone who has gone through a similar experience. Any conversations with a KrabbeConnect mentor should not be considered medical advice.
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