Raising a Family When One Child Is Living With a Rare Disease
13 min read/19 minute listen
Parents Avram and Monica share their experience of raising a family when one child is living with a rare disease.
Tagged in: Caregiver, parenthood, relationships, family
Practicing Self-care as Caregivers
5 min read
Caring for their son, Kalel, is Avram and Monica’s priority, but they have also learned the importance of taking care of themselves along the way.
Tagged in: Caregiver, self-care, communication, relationships
Everything in Its Place—The Benefits of Life Well‑Organized
9 min read
Kimberly and Steven faced many challenges after getting their son’s diagnosis. Little did Steven know he would find comfort while navigating one of them.
Tagged in: Parenthood, Caregiver, Medical information, Staying organized
How We Helped Justin Adjust to Virtual Learning
8 min read
During the pandemic, Justin had to transition to remote school. Kimberly and Steven share their 5 tips on how they prepared for in-person or remote learning.
Tagged in: Parenthood, Caregiver, School, Virtual learning, Listening
Connected, Not Isolated
9 min read
Zayd has learned many lessons along his journey, and he’s sharing them with us today. Take a look at 5 practical tips inspired by his experience. We hope you find them useful!
Tagged in: Vulnerability, Self-discovery, Community & relationships, Problem solving
How We Helped Justin Belong
9 min read
Kimberly and Steven share the wisdom they’ve gained while building a supportive community for their son living with Hunter syndrome. Take a look at 5 practical tips inspired by their experience.
Tagged in: Community & relationships, Parenthood, Problem solving, Caregiver
journey
The National MPS Society exists to cure, support, and advocate for mucopolysaccharidosis (MPS) and mucolipidosis (ML). They do so by providing student fellowships, research project funding, family support programs, and public event sponsorship.
mpssociety.orgThe National Organization for Rare Disorders (NORD) aims to support patients with rare diseases through educational, advocacy, and research programs.
rarediseases.orgProject Alive is a powerful voice for children and adults with Hunter syndrome, bringing together families and advocates with researchers, industry, and regulators. Through its innovative campaigns and grassroots efforts, they've made significant advances in public awareness about Hunter syndrome, the need for early diagnosis, and available treatments and clinical trials.
projectalive.orgMore inspiration IS on the way
Visit us often to find new resources and stories we hope you’ll find useful and inspiring.
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