Note from Alice: The Next Generation
The hearts and flowers of Valentine’s Day can be a cheery spot as we grow weary of winter and distract ourselves a bit by celebrating all kinds of love.
This year I have a new, precious love — my first grandchild. He entered the world healthy and with a Beatles mop-top in early October. Since he arrived, I’ve been thinking about the long rope of genetics that stretches forward from parent to child to grandchild. I have a deeper understanding of the concern and commitment I’ve often seen in grandparents when it comes to celiac disease and their grandchildren. I am my grandson’s closest relative with celiac disease, but he does carry some increased risk of developing this serious autoimmune condition. A child with a grandparent or other second-degree relative with celiac disease has a 1 in 39 chance of getting celiac disease, while one with a first-degree family member — a parent, child, or sibling — has a 1 in 22 chance. This compares to 1 in 133 in the general population.
The other grandparents I have met and talked with are among those most focused on finding new treatments and a cure for celiac disease. They want their grandchildren to be able to grow up without the symptoms and potential long term complications of celiac disease. One of the hardest things is to watch their grandchildren suffer physical pain. But grandparents also don’t want their grandchildren to be restricted by the gluten-free diet, still the only treatment available. When their grandchildren are young, the grandparents worry about how the children will manage school lunch and birthday parties. Next come the concerns about how they will be able to participate in school sports trips, then dating, then choosing a college. These are all the issues that parents of children with celiac disease face, but grandparents are sometimes particularly pained that their grandchildren have to navigate so many things in life that should be much easier.
Beyond Celiac has robust plans for improving life for everyone with celiac disease. We have a science plan that lays out bold ways we will advance research, including investigating disparities in healthcare through a partnership with the National Minority Quality Forum (NMQF), a research and educational organization, to identify those who have fallen through the cracks and remain undiagnosed. We continue to fund researchers through our ongoing grants program. We partnered with a record number of key biotechnology and pharmaceutical companies in 2020 to recruit patients for clinical trials of promising treatments for celiac disease.
While finding new treatments and a cure for celiac disease so that people with the condition can eat without fear and live full, healthy lives became the mission of Beyond Celiac long before my grandson arrived, it has become even more personal to me since his birth, reaching out to the next generation in my family. I have a renewed passion, and his name is Jesse.
Together for a cure,