The GFPD advocates for Paid Leave for Family Caregivers Across the Lifespan
Over the past year, millions of family caregivers found themselves needing to isolate or take leave to care for family members, scrambling to fill gaps in care—often without paid leave—as many older adults and people with disabilities lost access to services. Many people are sandwiched between providing care to an older adult or relative with a health condition and typical childcare duties. Children with disabilities relied on family caregivers not only for lost services, but for school demands as well. With the limited exception tax credits to cover a narrow scope of COVID-related leave, federal response legislation to the coronavirus pandemic has largely excluded support for family caregivers. The GFPD signed to a letter spearheaded by the National Alliance on Caregiving, UsAgainstAlzheimers, and The Arc to urge the Biden Administration to prioritize these families when developing additional—and needed—economic recovery policies, including a permanent paid family and medical leave policy that is inclusive of all family caregivers across the lifespan.
She's five-years-old, loves all things pink and glitter, and will be sporting a pretty magical costume this Halloween. But what makes Maddie Holt's costume extra special is that it was designed specifically for her wheelchair.
Letter to the Editor: Do an act of kindness to mark Pause for PBD
Peroxisomal Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic, condition affecting multiple organ systems in the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare, genetic disease that most people have never heard of and has no cure.
The GFPD joins with the TS Alliance to Advocate for Prioritization of Individuals with Rare Diseases and their Caregivers to have Immediate access to COVID-19 Vaccines.
On February 12, 2021, the GFPD joined with the TS Alliance and 69 other advocacy groups, healthcare providers and biotech companies to submit a letter to the National Governors Association imploring them for immediate and improved access to COVID-19 vaccines. Additionally, following the lead of the TS Alliance, the GFPD created a template letter for parents and caregivers of individuals with peroxisomal disorders to personalize and submit to their respective local officials requesting immediate vaccine access. GFPD families can reach out to for a copy of this letter.
Oct. 5 is a special day for our family as we celebrate Pause for PBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). Our son, Ethan, is seven years old and is one of 175 children known to the GFPD living worldwide with Peroxisome Biogenesis Disorder (PBD).
NJ mom to run Philly marathon to bring attention to rare disease
De Jesus says that it was a specialist in Canada who diagnosed Jaxson with Peroxisomal disorders. The conditions are so rare that if 4 million children are born this year, less than 100 will have the disorder.
The GFPD (along with hundreds of other U.S. nonprofits) advocates for additional 2021 COVID relief, led by the National Council of Nonprofits.
At this time of a worldwide pandemic, economic uncertainty, and national turmoil, there can be little doubt that America desperately needs leadership, unity, and aggressive actions to overcome these and many other challenges. The GFPD, along with hundreds of other U.S. nonprofits asks Congress and the Administration to recognize the unique role of charitable nonprofits in providing pandemic relief and economic recovery by enacting a package of relief solutions tailored to the actual needs and realities of these organizations that are devoted to serving the public good.