Photo courtesy of Michael Garcia Day 24 of 31 This is Michael Garcia’s (@teacher.mike72) story: I believe in miracles. I believe in God. I believe in his will both on earth and in heaven. Nearly two years ago, we contacted our family pediatrician to inform him that our…
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
Photo courtesy of Lana del Roll Day 23 of 31 This is Lana del Roll’s (@lanadelroll_official) story: If you have a disability, you are worth a closer look. Those who can see the real you will find you and stay forever. Because you are not a disability; you…
Photo courtesy of LaMondré Pough Day 22 of 31 This is LaMondré Pough’s (lamondre_p) story: Everyone has a desire to be seen. When I say that, I’m not talking about a gratuitous need for attention, or someone stricken with the “pick me” syndrome. I’m talking about the recognition…
Photo courtesy of Vita Bernik Day 21 of 31 This is Vita Bernik’s (@wheelchairsparkle) story: Hey there! My name’s Vita, I’m 23 years old, and I’m from Slovenia. I’m a university student studying criminal justice and security, a blogger, and a model. In 2019, a photographer reached out to…
Photo courtesy of Seda Karakaya Day 20 of 31 This is Seda Karakaya’s (@lifebeyondmywheels) story: Hey! This is Seda from Turkey. I’m a 24-year-old college girl with SMA type 2 who studies two majors at two different universities. Nope, one wasn’t enough for me. I guess I like…
Photo courtesy of Bryarly Parker Day 19 of 31 This is Bryarly Parker’s (@movingmountainsformightymax) story: Max was diagnosed with SMA type 2 on Nov. 24, 2020, in Alberta, Canada, when he was 22 months old. We realized something was wrong when he stopped weight-bearing, was barely moving…
Photo courtesy of Noelle Hazel Day 18 of 31 This is Noelle Hazel’s (@noellegrace14) story: Hi! My name is Noelle, and I have SMA type 2. I have a brother who has the same disease type. Growing up with a sibling who is disabled has truly helped me…
Photo courtesy of Sarbjot Kaur Day 17 of 31 This is Sarbjot Kaur’s story: Mehtab, whose name means moonlight, is our cheerful, adorable, and compassionate 4-year-old son. He loves playing with superheroes, dinosaurs, and Legos — his favorites are Black Panther, Batman, and T. rex. After numerous visits to…
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…
