Greetings! I wanted to take a few minutes to give you an update on NDRF, and share some exciting news that I believe will have a significant impact on research into the disorders of the autonomic nervous system, as well as help provide improved diagnostic and treatment options. I believe that you, too, will agree that these programs are deserving of our support.

First, I want to share with you the tremendous results we have seen in raising awareness of these conditions as a result of our participation in the Discovery Health Channel’s program Mystery Diagnosis. After discussions with a long time supporter of NDRF, the show’s producers contacted the Foundation and suggested an episode featuring my personal struggles to find answers to my perplexing symptoms. After many letters, conference calls, and several very long days of taping, the producers whittled many hours of video into a feature they entitled “The Woman Who Kept Falling Down”. Airing several times during the past few months, the show features a review of my medical history and an explanation of my diagnosis by Dr. David Robertson, the director of the Autonomic Dysfunction Center at Vanderbilt University.

With each airing of the episode, NDRF receives a steady stream of messages from viewers who have realized that there is an answer to their confusing symptoms. Often, the person contacting us shares a sense of relief at finding someone else who has experienced the same symptoms, with statements like: “Watching your story on Mystery Diagnosis last evening may have changed my life.”, and “We don't feel viewing your story on Discovery Health this eve was a mere coincidence! Please help us.” I am so very pleased that our participation in this program is reaching so many people. The number of contacts we continue to receive reinforces the importance of the Foundation and our Mission.

NDRF has a long history of working on behalf of the community of people impacted with Dysautonomia. Since our founding in 1997, we have reached many milestones that have helped improve the lives of those impacted with disorders of the autonomic nervous system, including

• Providing the first web portal for individuals impacted with the various forms of autonomic dysfunction
• Providing the NDRF Patient Handbook, a no-cost, e-book for patients, families and the public
• Hosting major medical conferences for medical professionals and patients
• Presenting information on Dysautonomia before Congress, the National Institutes of Health, the Department of Health and Human Services and other government agencies
• Providing funding and collaboration on medical research with leading autonomic research centers
• Funding medical professional training through CME and other programs
• Speaking at major medical conferences to educate the medical community on the impact of Dysautonomia
• Raising awareness through press, radio and television programs as well as direct mail campaigns to physicians throughout the country

As you can see, with your help, we have been able to accomplish so very much! We can all be proud of the fact that the medical community recognizes NDRF as being the voice of Dysautonomia and seeks out our input and support.

Recently, the Foundation has committed to assist in several new programs that will be joint ventures between government agencies, medical research centers and NDRF. Here is a brief description of the programs:

NDRF – NIH Neuroimaging Symposium:The disorders of the autonomic nervous system are typically difficult to diagnose. Frequently, the patient must undergo numerous tests that require a large investment in time and money. Studies done at the NIH and other centers have indicated that there may be a diagnostic benefit gained by using neuroimaging tests. This symposium is an effort to help determine the benefits of using this type of testing and to determine how best to expand its use.

Research Consortium: Although the National Institutes of Health provides funding for research, there has been no clear oversight by a single group within NIH to control the research directives into these disorders. A recent initiative has been proposed that would provide a directed oversight program for autonomic dysfunction research. This program would provide for collaborative clinical research, including longitudinal studies of individuals with Dysautonomia, support for clinical studies, training of investigators in clinical research of Dysautonomia, and funding for pilot projects. The new initiative will also provide access to information related to Dysautonomia for researchers, academic and practicing physicians, patients, and the public. NDRF will be a partner in the program, providing input from the patient perspective.

NDRF Intern Program: Funding for internships and fellowships for autonomic nervous system research is a great way to stimulate interest and provide new ideas for research. NDRF has provided funding in the past to help foster young researcher’s interest into this field. The establishment of a formal program will ensure that young researchers have an opportunity to contribute with funding from NDRF.

I believe that each of these new opportunities is well deserving of our support, and I hope that you will join me in making these programs a success. Our Mission can only be met with the financial support of you, and others who realize the value of these important programs.

Your donation can help NDRF assure that the voice of the patient is heard. Won’t you join me in helping make these new programs a success by making a gift to NDRF today? A donation of $50, $100, $500 or $1000 to NDRF provides you with a way to directly contribute to these important programs. NDRF has set up an automated program with Network for Good that allows you to make online contributions through a secure website. You can visit the NDRF donation site by clicking of the following link: NDRF Donation Page. Through this site, you can make a one-time gift, or set up a recurring donation that can be made monthly, quarterly or annually. This option allows you to spread your donation into a more manageable monthly donation, while allowing NDRF to budget for these important programs. Of course, you can always send contributions directly to NDRF through the mail, or call our offices to contribute.

I want to thank you, in advance, for your support. Please feel free to call me if you have any questions regarding these new programs.

Warmest Regards,
Linda J. Smith

This message has been edited. Last edited by: Dan Smith,

When does it air? Or has it already aired?

The next airing of the show is on Sunday, June 22 at 11:00 am EST . We posted the upcoming schedule on the entry to the Forum -www.ndrf.org/eve

Thanks for the update and the great work you are doing. Would it be possible to post a summary of current research and/or what the different centers are now working on?

Linda---
Thanks for sharing this. Good to hear about the progress.
Gen

Linda-
This is wonderful news!
Have you thought of contacting the Oprah show?
She features many health related segments with prominent physician consultants and individuals relating their personal stories. Recently, there was a segment on death and terminal illness.

Think of the exposure Dysautonomia would get, not to mention the donations!

The Oprah web site has an open ended question, "Tell us your story". They vet the stories and if they find it compelling, it could end up as an on air feature story. Worth a try perhaps?

Thanks again!

We have contacted the Oprah show on several occasions. Unfortunately no one has ever contacted us back! I know that others have tried to reach her as well with no success.

i recently found this site. i surprised that most of doctors do not want follow up on the systoms listed. my fainting usally is left to circulatory conditions. i presently scheduled for vascular surgery. i wondering how long this repair will hold off the eventual event that will sudden cardiac death.

I am new to the forum and have self diagnosised myself with Dysautonomia. I have been diagnosised with Inappropriate Sinus Tachycardia but my symptoms consisted of the following pulse rate of 136-140 upon standing, laying down it would fall to 100-120. My BP was 180/110 standing and laying down was 150s/90s. So instead of dropping it would rise upon standing. I have always been tachycardic but not to this point and my BP has been fine to the low side. I have had intolerences to standing for long periods but only 1 episode of fainting at 16 years old and I am now 45. Last week I had been taking my Beta Blocker as ordered as I have for the last year and my BP was 140s and dropped to 100s upon standing. so just the opposite of the previous symptoms. I went off the BB for a couple of days and my pulse went right back up and my BP went up but not as high. Anyone else with this phenomenon? Who treats this? Do you see one of the specialist they have on the Dr. list? I also have fibromyalgia with Chronic fatigue, Raynaud's, narcolepsey, hypermobility syndrome as well as the Inappropriate Sinus Tachycardia. Please tell me anything that you can about this. I am also a nurse and am VERY interested! Do most people who have dysautonoia die from sudden cardiac death? If so, at what age? Thanks so all for any answers.

quote:

Originally posted by Linda Smith:
We have contacted the Oprah show on several occasions. Unfortunately no one has ever contacted us back! I know that others have tried to reach her as well with no success.

Yes, I contacted the Oprah show too. But got no reply. Yet, I also wrote an e-mail to Camryn Manheim -- actor on the now ended drama series "The Practice" and the currently showing "Ghost Whisperer." I had never written to a celebrity before but I just love the way she portrays these strong women in her characters and I felt compelled to tell her so.

A couple of months later I got a reply from her, apologising for her delay in getting back to me, and thanking me for my e-mail to her. One single mum actor with lots of stuff to do and she can answer an e-mail personally.

Oprah is obviously a mega-celebrity but she has a ton of staff and I'm just over the attitude that we can write to ask her to feature something and we don't even get a response from one of her many staff. Even when they were asking for people to write in with their accounts of a particular illness (not dysautonomia) did anyone respond. It leaves me cold.

Mindy,

I see your post is a bit old but just wanted to say that my doc has reassured me that no-one dies from POTS. I tend to believe him. And I'm 52 and have had symptoms of POTS (undiagnosed for most of those years) for most of my life.

Linda and Dan,
Thank you for posting the dates of your show, I got to tape it. Linda and Dan, I am so sorry for the loss of your first child; my daughter is six months pregnant right now - made my heart ache for you. Dan, God Bless you for being a real man and not giving up and advocating for Linda, we are all blessed here because of the courage and combined determination you have as a couple. Wish my husband would have chosen to be like you instead of taking the other side and wishing me to just die and get it over with. I will shove this tape in his face when I divorce him.
My grief when I cut victimizers out of my life is always for "what could've been, but for a choice." Y'all know me over time. I just don't quit and roll over - and if I do, I usually just stay down for awhile, catch myself, and get back at it again from a different angle. It would be so much easier to be half of a whole in those times where it's just me and the wall.
I thank you again for saving my life through this forum. God Bless, Cheryl.

Wow! Guess I missed out. That's what I get for taking the summer off from dysautonomia. (LOL! Don't I wish!) But, I did stay away from my new computer for much of the summer, as its my first sunny summer in 100 years (almost) now that I moved from AK!

I am really bummed that I missed this episode of mystery diagnosis. Do you know if it is available to purchase? I would really love to see it. I searched on the Discovery Channel web-site and found a listing for it, but no way to view or buy it... Any ideas??

sheri

Linda,

I think I know how you can get on with Oprah. The Doctor I will be seeing in Sacramento studies under a well known International Doctor.
It took him a bit of time but he went through Dr. Oz and had a patient of his on the Oprah show with Dr. Oz on Fibromyalgia. Oprah has now done several radio talk shows with this same Doctor and he is also making the link with CFS/Fibromyalgia and Dysautonomia and trying to find a cure with his research and is opening Clinics nation wide for treatment. Let me know if I can help.

Kenneth