Hi, Kathaleen! I hope you get a lot of response.
In searching that region, these advocates came up:
1. teri dreher frykenberg
2. maura lessard
3. katie krupka
4. mary-anne schelb
5. noel harrington (who also volunteers with the GNA team)!
Dalia,
First, i'm so incredibly sorry for what your family went through. NO ONE should ever be treatd that way, for any reason whatsoever.
Second, YES! THANK YOU for saying what is so often unsaid — that weight is about so much more than willpower.
My youngest was a competitive bicyclist. She regularly went, literally 100 miles in a day on her bike. When we were seeing docs about her post-exertional malaise and her orthostatic intolerance, EVERYONE tried to blame her weight. When i explained how fit the girl was, then they would blame overtraining and yet also somehow come back to it being due to her weight. Drove me CRAZY and drove her away from medical care for a long time.
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 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
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.
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.
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.
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.
In searching that region, these advocates came up:
1. teri dreher frykenberg
2. maura lessard
3. katie krupka
4. mary-anne schelb
5. noel harrington (who also volunteers with the GNA team)!
First, i'm so incredibly sorry for what your family went through. NO ONE should ever be treatd that way, for any reason whatsoever.
Second, YES! THANK YOU for saying what is so often unsaid — that weight is about so much more than willpower.
My youngest was a competitive bicyclist. She regularly went, literally 100 miles in a day on her bike. When we were seeing docs about her post-exertional malaise and her orthostatic intolerance, EVERYONE tried to blame her weight. When i explained how fit the girl was, then they would blame overtraining and yet also somehow come back to it being due to her weight. Drove me CRAZY and drove her away from medical care for a long time.
THANK YOu for saying what needs to be said.
THANK YOU for such a great introduction! We're so glad you're here. we hope you find helpful information and connection with us here.
gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Columbus%2C+OH+43085%2C+USA&distance=75
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
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!
gnanow.org/advocates?locations=Virginia+Beach%2C+VA%2C+USA&help_text=dysautonomia&search_type=help_text&distance=500
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
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!
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!
At the BOTTOM you are welcome to write a brief bio and to include information on your free resource site.
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