Pompe Alliance

10/02/2026

By now many of you may have heard that our dear friend Vanessa has passed away. I was so lucky to have Vanessa in my life, she was a good friend and always willing to help and support the Pompe Community and Pompe Alliance as a board member and volunteer. Judging by the number of calls and texts I have received today, I know that Vanessa touched my lives in the Pompe Community. I don't always have the right words in times like this, we lost a shining star, and the world is a little less bright today.

Pompe Alliance would like to host a virtual gathering to honor Vanessa's life. A time for us to come together and share our memories and support each other (more info to come).

09/29/2026

https://www.pbs.org/newshour/health/as-work-requirements-kick-in-for-medicaid-some-states-are-taking-a-tougher-stance?fbclid=IwZnRzaAUooodleHRuA2FlbQExAHBkb2YFZmRpZBZQ9WY4Vl9R7e9Rxbeym7Ld9eKhxukqc3J0YwZhcHBfaWQKNjYyODU2ODM3OQABHhMHv-NJF8vxkRttyqaC7SoPASuKnhEVheH458MFE9sGOmcPJcgB6SuSuIzI_aem_p0R2lODHy5OweaqKgkTl-A

At least six states will require documentation that individuals are too sick to meet Medicaid work requirements kicking in next year. The rules are stricter than what the federal government is requiring.

09/29/2026

My presentation starts soon!

09/15/2026

I wrote this column for Pompe Disease News.

Heather Shorten shares how living with Pompe disease has shaped her approach to family, adaptation, advocacy, and finding joy.

09/11/2026

https://pompediseasenews.com/news/chronic-pain-affects-83-late-onset-pompe-disease-patients/

Chronic musculoskeletal pain affects 83% of people with late-onset Pompe disease, but may be missed in single clinic visits, a study found.

09/05/2026

September is Newborn Screening Awareness Month.

09/02/2026

September is Newborn Screening Awareness Month!

09/02/2026

https://www.docwirenews.com/post/does-switching-to-avalglucosidase-alfa-improve-outcomes-in-late-onset-pompe-disease

Switching to avalglucosidase alfa may stabilize Pompe disease in patients experiencing significant walking decline.

08/31/2026

https://ohiocapitaljournal.com/2026/08/25/medicaid-changes-to-reduce-payments-for-hospital-services-in-at-least-37-states-including-ohio/

New research shows that at least 37 states, including Ohio, could see reduced payments for hospital services because of Medicaid funding changes.

08/28/2026

Interesting story about caregiver burnout.
https://www.facebook.com/share/19C8TAvLAC/?mibextid=wwXIf

Last October, Dolly Parton gave her fans a health update.

In a video entitled “I ain’t dead yet!,” the singer explained: “Back when my husband Carl was sick, that was a long time, and then he passed, I didn’t take care of myself, so I let a lot of things go that I should have been taking care of.”

While that video update 10 months ago may have felt like a small detail in the life of one of America’s most beloved musicians, it gives voice to a big problem immediately recognized by many of America’s 63 million caregivers.

When you care for someone else, it is all too easy to neglect to care for yourself. https://cnn.it/4xqqCxL