AnnMarie Cross

I have reached out to several advocates who I hope might have some insights for you.

HI alison! welcome and thanks for introducing yourself!

There's a huge thread of introductions. I'd like to encourage you to add your info there and interact with others in that conversation!

gnanow.org/community/taking-business-to-next-level/general-tbnl/91-welcome-to-pa360-please-introduce-yourselves.html

Hmm, I can't speak to this firsthand, but as this is common in other sports of small business, it doesn't feel like a super unusual request.

I hope others have helpful insights here for you!

test2test2

Thank you!

Thanks so much forsharing, jeff! that suggestion makes so much sense.

LINKS:
pubmed.ncbi.nlm.nih.gov/42899629/
pubmed.ncbi.nlm.nih.gov/42899414/
pubmed.ncbi.nlm.nih.gov/42880660/

Here's this week's updates!

Pharmacotherapeutic management of chronic pain in joint hypermobility and Ehlers-Danlos syndromes: a clinical perspective.
Expert opinion on pharmacotherapy, 2026

This review examined the evidence for using medications to treat chronic pain in people with joint hypermobility and Ehlers-Danlos syndromes. The authors found that current evidence is low-level and does not support the effectiveness of any specific drug for this type of pain, suggesting that a multimodal approach is more appropriate than medication alone.

View publication ↗

EXPRESS: Cerebral Microbleed Burden After Aortic and Cardiac Surgery Is Associated With Extracorporeal Circulation Exposure: Evidence From Young Patients With Heritable Connective Tissue Disorders.
Journal of cerebral blood flow and metabolism: official journal of the International Society of Cerebral Blood Flow and Metabolism, 2026

In a study that looked back at records of 111 people with heritable connective tissue disorders, researchers found that all 58 patients who had surgery involving a heart-lung machine developed small brain bleeds. The number of these bleeds was higher in patients who had multiple surgeries or longer time on the heart-lung machine, though the study does not suggest these findings are specific to any one surgical technique.

View publication ↗

Contemporary Management of Subclavian and Axillary Artery Aneurysms in Connective Tissue Disease: Navigating Therapeutic Uncertainty in a Rare Vascular Disease Without Dedicated Guidelines.
Annals of vascular surgery, 2026

Researchers systematically reviewed 24 studies describing 43 artery aneurysms in 25 patients with connective tissue disorders, including 3 patients with vascular Ehlers-Danlos syndrome. The review found that open, endovascular, and hybrid surgical repairs achieved high technical success rates, with no reported deaths or limb loss during the study period. However, the authors note that follow-up was limited and that standardized management protocols for these fragile vessels are still needed.

View publication ↗

Thanks for sharing!

What Victoria shared is what we've heard over and over in the Facebook group.

THANK YOU SO MUCH FOR SHARING!!!

While I don't offer one-on-one advocacy, I advocate for advocacy every day in my work here at GNA.

My personal story of the difference advocacy COULD have made for my daughter and I when we were diagnosed back in 2001 is the first point where my own experience matters.

Also, using my own story to speak to my own community (EDS patients) has really helped me hear their pushback and questions, and to help demonstrate the value an advocate can bring even to a patient 25 years diagnosed.

I'm eager to hear from others!

sounds great thanks for sharing about it jessina!

We were able to find support for this client from our membership, thanks all.

I LOOVE that one of hteir goals is ot help get more upright MRis around the country!!!

Donna — THANK YOU SO MUCH for sharing this information!!!

This is such a huge need. we as the EDS community are so excited to hear about this progress. thanks for sharing!

Hi, Tiffany!
A few quick questions, then I'm hoping i might be able to tag soe folks.

1. does the advocate have to be in florida? i'm guessing not but didn't want to assume.
2. you mentioned in person is a plus. could you edit to add the client's location? (sorry if i missed it)
3. could you clarify that YOU have/are the medicare provider, so they just have to be willing to work thru the medicare paperwork/process/payment levels with you, not that they have to be independently able to accept medicare?
4. is it ok if i crosspost your post into the FB groups and encourage advocates tehere t join the convo here?

I feel like this is the most common answer when we've seen this question on FB. thanks for sharing!

Are there any specifics that you would encourage a new advocate to tell Hiscox when they call? Are there specific insurance types or anything?

thanks both of you for sharing!

I took a stab, hopefully its helpful!

thanks os much for sharing marc! would love to learn more about any unique challenges you see, for example, with seniors aging in place in such a massive city.