You work so dedicatedly and tirelessly. Bless your heart. I so appreciate it.
- Maria in Chicago
John … still advocating away when others would give up. you are truly an amazing man that we all admire.
- Ellen in RI
Thanks, John! Your webinars were my guiding light in the early days with my daughter
- Cheryl – TCAPP
I don’t know where we in the EDS community would be without you!
- – Trisha Rochester NY
John Ferman. He is an amazing gentleman. He has single handedly done more for the EDS community than anybody.
- Dr. Pradeep Chopra
- Kat from Idaho
I can’t begin to thank you for the work you’ve done to enlighten those of us with EDS about our condition.
- Norma from Pittsburgh
As a person who suffers from hEDS I am beyond thankful for the fact you guys are bringing not just awareness but you have products for us too! I am emotional writing this with tears rolling down my face for we have been ignored for so long and you guys are a blessing time to shop!
- Erin
Thanks so much for having Dr. Francamano on the webinar. As always your website is hands down the most helpful to all of us who have EDS.
- Laura from California
I can’t thank you enough for the service you are providing to help educate both patients and physicians.
- Julie from Tucson
Thank you for all of your effort to increase awareness and knowledge of EDS and bless you for taking care of your late wife.
- Patricia from Sarasota, FL
You just made me feel so much less isolated thank you!!!!!! ️
- Rachel from Atlanta
I have started watching the webinars and I am so thankful. I feel more grounded and organized with these educational and organizational help. So much appreciation!
- Jeni from SF
Thank you for the amazing work you are doing. It is exciting to hear about the great success of the EDS Physician CME program and the planned CEU program!
- Martin from Germany
Thank you John! I love being a part of this group! You are such a valuable resource, and you are dramatically impacting several thousand lives…over 200 just in Nebraska!
- Colleen in NE
- Candice from PA
I would like to express my appreciation for the awareness that you have generated regarding EDS and the incredible effort you have put in for this venture. Very grateful for all that you have done and are doing for the EDS affected individuals.
- Huda
The most beautiful pamphlets that I have ever seen!! Wow – very professionally done and informative! I will be very proud to distribute these I think having professionally looking materials helps people take us more seriously.
- Wendy from KC
You do great work and are consistently there for all those who are working to keep the support groups going. I Refer everyone I hear from to you and the diverse programs that you offer.
- Sandra from Texas
- Enid from Florida
- Jackie from Chicago
Thank you a million times for all you do and the wonderful work and resources you provide. As an EDS patient I am so grateful. This organization is the best one for EDS patients.
- Michelle from Kentucky
Thank you so much for the effort, dedication and sacrifice that you and your daughter have made for so many people around the world including those living in the forgotten parts of the world like us.
- Magan – Somalia
Thank you so very much for providing me with all of these resources…I should have reached out for help such a long time ago. I look forward to looking at all of them and attending meetings in the future.
- Katharine from Pittsburgh
- Joanne in Ontario
First of all I would like to say thank you very much for your unwavering support of EDS Wisconsin. I am so thankful that the EDS community has you and I deeply appreciate the time and effort that you have put into awareness and education for EDS.
- Tammy in Wisconsin
- J. Rene in Utah
- Doris from Austria
I want to let you know that I appreciate the webinars so very much. I have learned a lot from them and hope you continue to present them as more is learned about EDS and treatment.
- Barbara
Thank you John, your daughter Deanna and your darling wife who ultimately lost her life. You are the real heroes for sharing this information and getting it out there. We appreciate you and your daughter for being such fantastic advocates of this horrible illness.
- Jane
We do like your webinars which are freely available on youtube after the live session ends. And that is so kind and generous of you. I do live here in Pakistan and I am a young physician with a mast cell activation disorder (not EDS) and I find tremendous help whenever I watch your wonderful webinars. Thank you for the wonderful work that you. And we do regularly watch your youtube videos here in Pakistan.
- Magan from Pakistan
Thank you all of your years of help and support!
- Marsha – Austin EDS Support Group
What an amazing resource for people with all sorts of chronic pain syndromes and diseases! I think this is wonderful site for people who have disabilities.
- Tara
Thank you for your dedication and selflessness. You make lives brighter and hearts more full. While we may need to rely on braces to physically support our joints, it is your support that has kept so many from crumbling physically and emotionally. Your tireless efforts reach farther and deeper than you could know. Thank you.
- Alexandra B. from Ohio
- Trisha
So exciting to hear about the wonderful things that you continue to do for our zebra community! As a support group, we are so grateful you support us! The DFW group is almost to 650 members and growing! Thank you for all you do for our community!
- Jenny – DFW EDS Group
Hi John and Deanna –
- Sarah – EDS VT
- Christina Metro DC Area EDS Support Group
I wanted to thank you for all you have contributed. My own father never took a real interest in understanding my HEDS. He finally watched one of the educational webinars one day and I think the part about you doing this for your daughter really got to him. He started independently researching HEDS after that. And having real conversations with me about it. It surprised him that a father of an EDSer was so involved but at the same time it sparked something in him. My relationship with him is better today than it had been in 30 years. Thank you again.
- Nilima in Texas
Much gratitude for all that you do! I am now fortunate to have your educational webinars as part of my arsenal to help me do my best with our EDS patients.
Best wishes to you and your families for the holidays.
- Norman Marcus, M.D.
Thank you so much for your post!
Your wife’s struggles mirror my own in so many ways.
My daughter was diagnosed with EDS almost a decade ago, but the doctor’s in the area considered it a ‘non-illness’, gave us zero information, & zero help.
As both our healths deteriorate, I’m back to looking for answers, solutions, or even just ideas & direction.
You’ve given me a cohesive way to explain the symptoms to the rhumatologist I go see next month.
THANK YOU!!!!
- Dawn F.
Your website has a wealth of information and we have watched quite a few of your webinars. You and Deanna are doing a wonderful service!
Thank you, again,
God bless.
- Carol from Hawaii
Dr. Pocinki’s webinar has given me HOPE! and the next webinar ties right in with everything I have gone through, so I just wanted to say a special thank you for putting these webinars out there for those of us in search of answers.
I hope and pray I can bring these answers back to my Psychiatrist at Tuft’s and my other Physicians, especially if I I’m successful in getting relief from my symptoms, and help to raise awareness of EDS & POTS to help others.
You & your Team are a blessing – please keep up the good work for us Zebras! I really appreciate all of your efforts. God bless you!
- Leah from MA
Hi John, My daughter Elisabeth has EDS and we’ve attended some of your webinars. Thank you so much for providing this valuable service! We’ve both learned something new from every single speaker.
- Trisha from PA.
Thank you for having the seminars. They are most informative.
I am teaching on Tuesday afternoons, but I will try to attend all Tuesday evening seminars.
Again, thank you.
- Dr. Stalvey from South Carolina
I want to thank you both. John, I remember you from the EDS Conference in Northern Kentucky. You were starting up the EDS Awareness.com program then. Seemed very sad still from losing your wife, explained her story to my daughter and I. Very sorry. I still have the business card.
I hope things are better. My only child has EDS, then got Lyme. Can’t figure out if EDS could be this bad. I keep trying to find time to view the seminars online.
I just appreciate both your efforts. As I try to keep my daughter and I both wanting to live, trying to find help, I know there are good docs, just not here.
God bless you both from the EDS community. Sincerely, Rebecca
- Rebecca – From 2012 Conference
Thank you so much for getting a presenter on the topic of pharmacogenetic testing. I hope that many medical providers get to see this as well.
I am so grateful for the wonderful webinars you produce. You are wonderful.
- Maria in Chicago
Thank you so much for all you do to help so many EDSers! We appreciate the webinars and information EDS Awareness provides and will happily provide it to the MetroDCArea support group.
- Christina H. in DC
Dr Pocinki’s webinar has given me HOPE! and the next webinar ties right in with everything I have gone through, so I just wanted to say a special thank you for putting these webinars out there for those of us in search of answers.
I hope and pray I can bring these answers back to my Psychiatrist at Tuft’s and my other Physicians, especially if I I’m successful in getting relief from my symptoms, and help to raise awareness of EDS & POTS to help others.
You & your Team are a blessing – please keep up the good work for us Zebras! I really appreciate all of your efforts. God bless you!
- Leah from MA
Deanna,
My daughter LOVED meeting you!!! She talked about how much she appreciated having someone who understands how she feels to talk to. In fact, she talked about how grateful she was to meet you almost the whole way home!! It was so nice to finally see HOPE in her eyes and not fear.
I cannot thank you all enough. Honestly, if it weren’t for you and your dad, can you imagine where so many of us would be right now? That is a terrifying thought to me. 3 months ago, I couldn’t imagine that there was a soul on the planet who she could identify with. You are simply a gift from God.
Thank you doesn’t really seem like enough!!!
- Kathy C. in Cleveland, OH
Our Alaska group is expanding very rapidly this past year. Up to nearly 50 members now due to the way I’ve outreached thru a pain management specialist and some other providers. It’s wonderful. Right now Alaska is getting cold and snowy. Our outdoors meets will be slowing down. More of our members are getting surgical procedures so resting mode at the moment. But I will keep you posted on any new things we do. I have members now reaching all the way north to Barrow Alaska. I also have my 5th family member in my personal family (close cousin) diagnosed officially. I was able to walk her thru it. So good things up here.
- Cissy from Alaska
I have learned a lot because of your webinars and “all that you do you to make a difference in my life and the lives of so many”Thank you for everything you do to help others.
- Kristi
- Kathi
John, my world has evolved immensely since you sent me an email a year and a half ago. I have EDS, dysautonomia, Mast Cell, etc. The information and lectures your organize provides have been invaluable. I will be at the conference in Baltimore and saw your name on the list of attendees. I really hope to meet you. Thank you again for all your help.
- Sue S. in Cincinnati
If any doctor says there is no treatment for EDS and that you don’t need pain medication, give them the www.edsawareness.com website and tell them there is treatment and pain medication is necessary and they can see for themselves by watching the presentations of EDS specialists dealing with treatment, pain. PT and many, many other EDS and related disorder conditions.
- Jon R. in New England
John – Thank you for all that you are doing to help with EDS awareness. You must be as busy in retirement as you were during your career – it is a lot to take on and much appreciated.
- Ann-Marie W.
Thank you so much for doing the EDS Awareness World-Wide Survey! Very interesting results. I am an EDS patient advocate in Sweden and I wonder if it would be possible to get an extract of the Swedish participant´s survey results?
We have for a long time been thinking of doing a similar survey in Sweden, but I realize that after your excellent survey we wouldn´t really have to since you seem to have covered everything. 🙂 Best regards,
- Monica H. in Sweden
Deanna,
Thanks again for this valuable info and absolute and much credit to you for the wonderful work you do on behalf of so many of us. It’s appreciated and then some 🙂
Kindest Regards….and gentle hugs! I love that saying – I’d never heard that before you said it 🙂
- Philippa in Westlake, Ohio
I cannot thank you enough for your generosity and kindness in providing these presentations. I have learned so much, and they have improved my life so much. As somebody who is housebound in Alaska, I have no idea where I would get some of these solutions if it weren’t for your great presentations. Thank you, thank you, thank you!
You guys are really something. Bless you!!
- Jill B. in Alaska
Thank you so much, again, to Deanna, John and all at EDS Awareness for the resources and support you provide. Your organization, along with a couple of others, give us hope as my son’s health continues to decline and we receive so few answers elsewhere. There really are no words to describe how much “a lifeline” like this matters in challenging times.
Continued best and blessings to all of you,
- Kathi H. in Oregon
I wanted to vote for you for that award the EDNF is giving out, but you weren’t on the list. IMO you do a staggering amount of work to help all of us. A simple ‘thank you’ hardly seems adequate – you deserve an award! 🙂 Please know how much I appreciate all that you and Deanna do for us.
- Colleen M.
Deanna &John, thank you so much for all you do. Have you considered having a place for voluntary donations on your page? I don’t know if you are a not for profit, but many people, including my family, greatly appreciate your efforts and would like to help support them. Thank you for all you do.
- Rona
Thank you for your website. It is very informative and makes a person with Ehlers-Danlos syndrome not feel so alone. Again thank you for all you do.
- Leslie T. in WI
John and Deanna are amazing people with true dedication to help educate us all that are suffering with EDS. They recognized, so time back, that many couldn’t afford to get to the conferences. So, chose to give of their time and money to bring the knowledge to us right in our own homes by sharing their webinars. I have learned so much, along with being allowed to have a voice with them. We all need to remain grateful for all they have done for so many – we are lucky!
- Ellen S. in RI
Thank you for Dr. O’Leary’s webinar …. I attend many of your webinars. The slides were terrific to have. I was stunned and appreciative to hear the physician nomenclature for “All in your mind”. Wow!!
Blessing to you for this incredible service.
- Adell S.
Thanks for sharing the EDS information John. My son was diagnosed with it last year. He’s been through four surgeries already. The awareness site was very informative. Hope you are well.
- Scott G.