# What Happened When Kasey Joined Forces With Other Parents By Taylor Kane Dec 04, 2020 • 3 min read _Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._ After Will was diagnosed with SURF1-associated Leigh syndrome, a rare disease caused by a mutation on the _SURF1_ gene, a doctor told Kasey and her husband to take their son home and enjoy what time he had left. “My life flashed in front of me. I felt sick to my stomach,” Kasey says. Will had been hitting all of his milestones until he was 18 months old. He started tripping and tumbling, especially as it got closer to bedtime. Then, Kasey noticed Will fall and not pick himself up immediately after. She thought she may be paranoid, but deep down she knew something was wrong. After an array of tests including a CT scan that identified lesions on his brain, Will received his diagnosis. SURF1 Leigh syndrome is a severe neurological disorder that, as Kasey describes, “takes away all your abilities, \[but\] doesn’t take away cognitive skills.” After Will’s diagnosis, Kasey began looking at life through a different lens. “It’s the little things that matter,” she says. Will is not only her personal hero, but her family’s inspiration. Still, it wasn’t always easy for Kasey to stay positive. She admits that the first six months after Will’s diagnosis was like “living in a nightmare.” This time was especially stressful for the family as Kasey and her husband also had a newborn daughter, who they knew could potentially be affected by the same condition. While Will was rapidly losing his physical abilities, Kasey says she was constantly watching her daughter to see if she too showed any signs of having the disease. While a genetic test ultimately showed her daughter did not have SURF1-associated Leigh syndrome, Kasey says she regrets hyperfocusing on the chance that her daughter could have the condition. Looking back, she wishes she had been able to pay more attention to her daughter’s first few months of life. Kasey maintains that she and her husband got through this difficult time in their lives by consciously deciding not to dwell in fear and anger, but to fight and have hope. This decision has not only transformed Kasey’s life, but has had a profound impact on the lives of others. In 2018, Kasey and several other families formed [Cure SURF1](https://www.curesurf1.org/) to fund a gene therapy project for their affected children. The organization is currently working with a biotechnology company that is preparing to launch a clinical trial for patients with SURF1-associated Leigh syndrome. In addition, last year she and another rare disease mom created the [Rare Village Foundation](https://rarevillage.org/) to provide fiscal sponsorships to parents and caregivers who want to start research projects for particular rare diseases. “It’s up to the rare disease community to push forward for research,” she says. Kasey encourages other rare disease parents who want to get involved in research efforts for rare diseases to “see if there are any existing foundations, and if not, approach experts and see if they are willing to collaborate.” She refers to the sharing of patient medical records as “the missing link” necessary to put all the pieces of the puzzle of rare disease research together. She describes the [AllStripes](/content/program/surf1/index.html) platform as an easy and accessible way for patients and families to share real world data and have access to all of their medical records. “Finally, patients have power! AllStripes can analyze and share data within our community through their simple yet powerful platform,” Kasey says. Ultimately, Kasey says her son, Will, is her driving force to help other families. “Put your dream out there,” Kasey advises. “You never know when you may find another family and join forces.” ## We know that every person's story is unique and deserves to be heard. Join our early breast cancer registry to be counted and share your story with research. ### Create a List List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records. #### Ensure You Have the Appropriate Legal Status It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own. #### Gather and Organize the Medical Records in One Place It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins. #### Review the Medical Records to be an Informed Advocate The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan. ### Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association #### Tips for Caregivers 1. **Build a support network.** When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own. 2. **Stay organized.** The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress. 3. **Explore treatments and clinical trials.** We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide. 4. **Make time for self-care.** It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.