AnnMarie Cross

Thanks so much for replying!

also, here are advocates within 75 miles of that location that may have some guidance for you:
gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Columbus%2C+OH+43085%2C+USA&distance=75

Here are adovcates who are m ost likely to have those connections:

Angie Galatas, SLP gnanow.org/advocates/medi.html
Shlomit Liberty, SLP gnanow.org/advocates/shlomit.html
Hannah Klassy, SLP of Dementia Dimensions gnanow.org/advocates/hannah-klassy.html

some suggestions for you that i've interacted with personally in this topic area…
anne wienke
megan karanfil
Rachel lee davis
kristina Kelly

if you dont care about location at all, i can give you a MUUUCH larger list.

if you can let me know if she is a trifecta patient (eds/pots/mcas) that can narrow the list more specifically.

i hope others reply here fo ryou also!

Here are advocatse within 500 miles who work with dysautonomias.
gnanow.org/advocates?locations=Virginia+Beach%2C+VA%2C+USA&help_text=dysautonomia&search_type=help_text&distance=500

HI, Kathaleen!

GREAT question! and thanks for posting (I've moved it to the «advocate referral needed» room for you.)

I hope some other advocates respond!

Unfortunately, I'm not aware of any EDS-related advocates in ARKANSAS. We have only 3 advocates listed in the state, and the one I would contact to see if she might work with EDS and just not put it on her profile is:
gnanow.org/advocates/victoria-powell.html

EDS specialists typically work nationwide, and might work with someone local if 'boots on the ground' are needed. There are advocates in Texas — like Rachel Garvin — gnanow.org/advocates/rachelgarvinat14thstreetadvocacy.html

There are really long tenured EDS advocates like Megan Karanfil who have worked with patients all over the country (and international).

there are super-specialized advocates like Dr Linda Bluestein who have a nationwide network of providers all across the country (but she is very expensive and can take a long time to get into her advocacy practice.)

Here's a super simple, «down and dirty» search for hEDS, nationawide, in the directory.
gnanow.org/advocates?search_type=help_text&help_text=heds&locations=

I hope this gives you a solid start! Feel free to email us at the ASC if you need to narrow down further to meet this client's needs.

--AMC

Casandera,
Thank you SOOO much for sharing this!

If you don't mind, I'd love to add a few thoughts…

1. If a newer advocate is looking to get out of their comfort zone, to learn types of things clients ask and to connect with other advocates, please contact me about volunteering with GNA's Advocacy Support Center («ASC»). We aren't a live hotline, but advocates are talking to real clients in need, helping to route them to the best resources.

2. If any advocate ever has a case they need help finding other advocates to consult, to contract under, or to make a warm handoff — again the ASC is here for you. POSTS LIKE THIS ARE IDEAL — and also, you're very welcome to ask our team to do a deep dive search of our directory and look for advocates who have the knowledge you're seeking.

Hav a GREAT day and thanks again for posting!

tammy, thanks so much for sharing this!

Kathaleen, GREAT question! I hope you get lots of response!

I haven't personally done it, but I have spoken with several patients that have had their advocate on the phone during an appointment — letting the provider know that of course upon the provider's arrival.

I'm super curious to see if others have insights as well!

Karen, this is GREAT! Would you consider also making it a blog post with us? in your «gna dashboard» is the blog creator. You can simply copy/paste it there, do any edits you need.

At the BOTTOM you are welcome to write a brief bio and to include information on your free resource site.

Renae, thanks so much for sharing this informative pst. I hope others will ask questions or share what's working for them!

Hi, Damiana! Thanks for asking!

here's a great resource that has a TON of links in it. One of them is «business in a box», which is from Nicole Broadhurst's program. I understand that package is free; she has other resources that are part of a paid service.

gnanow.org/community/survivor-support/room-1-ss/27-from-survivor-to-supporter-explore-turning-your-lived-experiences-into.html

test back to dmitriy

test comment.

hi jeff!
could you share a bit more about the need? is it just general medical guidance? specific conditions? happy to help make connections.

Ginger, It was such a joy to meet you during the informational session last week. Congrats on your adventure, and I can't wait to see all you do.

Allison, Thanks for sharing your introduction! We would love you to drop into the insurance & billing chat and share some helpful tips or start some good conversations about challenges in your space.

ShaTonga, welcome! We're so glad you're here and congratulations on starting on this journey.

I would love to help you finish your GNA profile draft and meet you during the informational onboarding meetings in the near future. If you need assistance, please don't hesitate to message us at help@gnanow.org.

thanks so much for joining us and for providing your introduction!

We would love for you to finish your GNA profile draft and to help you get your listing live. If you've encountered any difficulties or need assistance, please contact us at help@gnanow.org

Thanks so much for sharing your experience!