Hi All:
I hope this finds you all doing as well as can be expected.
Actually, I truly hope you are all doing really well.
I myself have had a pretty tough year plus, since my Chiari
Diagnosis, which, despite all that I've been through, including over
53 operations, is truly the first things that has completely blown me
away. And though Naz told me @ 1 1/2 years ago that I really had at
least 5 years until I really had to do anything about it, that 5
years seems to be shrinking rapidly & the symptoms are getting much
worse & in much greater frequency, including the headaches, general
loss of balance, unsteadiness & passing out completely (3 times in
the last 6+ months). They're checking everything else before I go up
to the Chiari Institute, as I'm still hoping against hope that it's
not all from the Chiari.
But what I truly want to remind you all about, is that the next EDNF
conference, of course attended by all EDS'rs is shaping up to be the
most awesome experience that anyone could even begin to believe.
You can easily go straight to the web site
www.ednf.org,
OR you can go directly to a general page strictly about the
conference (which is only the beginning of what is yet to be
confirmed,
http://www.ednf.org/index.php?
option=com_content&task=view&id=1475&Itemid=88888983
From there you can see that only part of the specialist that are
coming in to speak & spend time with people that want to speak to
them, are such amazing people as:
Clinical and Molecular Findings in EDS * * *
Nazli McDonnell, MD, PhD
Astute, talented, and personable, Dr. McDonnell has devoted the past
two years researching EDS, Marfan Syndrome, Sticklers, and Chiari
formations in her cutting-edge Heritable Disorders of Connective-
Tissue Study: National Institute of Health (NIH) Hereditary Disorders
of Connective Tissue. In fact, a cohort of patients at this
Conference have participated in it. Now learn about her novel
findings concerning EDS, including the incidence of autonomic
dysfunction; spine, endocrine, and lipid abnormalities; sleep
disturbance; bone density; and most exciting: the discovery of
similar VEDS disorders.
Friday, August 1, 8:45am-9:45am
SHE'S ONE PERSON THAT COMES FOR THE ENTIRE CONFERENCE & MAKES IT HER
BUSINESS TO SPEAK INDIVIDUALLY, TO EVERY PERSON THAT NEEDS TO SPEND
TIME WITH HER.
----------------------------------------------------------------------
Your Feet and EDS * * *
Patrick Agnew, MD
Almost every type of EDS person faces issues with their feet, and Dr.
Agnew has worked with EDS patients for the last 16 years. He's also
been an active member of the EDNF Professional Advisory Network
fielding questions about EDS.
Friday, August 1, 10:00am-10:45am
----------------------------------------------------------------------
Interventional Radiology * * *
James Grotta, MD, PhD
Dr. Grotta explains how a relatively new, image-guided, minimally
invasive diagnostic and treatment technique, interventional
radiology, can be an alternative to surgery; especially when pain,
cost, and trauma to the body are issues. You will learn when IR might
be the best treatment: brain stenosis, vascular disease, aneurysms;
and how an IR specialist works with your primary physician. The
success rate? You'll have to come to his session to hear the
statistics.
Friday, August 1, 11:15am-12:00noon
----------------------------------------------------------------------
Ask the Doctors
Panel of Physicians
Perhaps our most popular session, attendees will have the opportunity
to ask a myriad of questions concerning EDS. Have yours ready!
Friday, August 1, 1:15pm-2:30pm
----------------------------------------------------------------------
Living with EDS * * *
Linda Neumann-Potash, RN
As a mother of an EDS child and a registered nurse, Ms. Potash gives
attendees a bird's eye view of the psychological and medical aspects
of raising a loved one with EDS. You will really enjoy her hands-on
experience and layman's terms, as well as the ease in which she
fields questions.
Friday, August 1, 2:45pm-3:30pm
----------------------------------------------------------------------
EDS and Pregnancy *
Joseph Ernest, MD
If you have EDS, especially VEDS or CEDS, you definitely want to
approach pregnancy with caution. Learn why pregnancy can be traumatic
(even life-threatening), how you can prepare for pregnancy, and how
to select the right doctor.
Friday, August 1, 4:00pm-4:45
----------------------------------------------------------------------
Cardiovascular Surgery and the EDS Patient *
Dr. Joseph Coselli, MD, FACC
Professor and Chief of Cardiothoracic Surgery at Baylor College,
Chief of Cardiovascular Surgery at St. Luke's Episcopal Hospital,
and Associate Chief of Adult Cardiac Surgery, Dr. Coselli has
performed more than 5,200 Aortic repairs and 2,250 thoraco-abdominal
aortic aneurysms repairs. It's no wonder that he's internationally
acclaimed as the world's most successful surgeon in his field. This
session is a must for Classical and Vascular types, as well as every
doctor and healthcare professional. And as we learn more about EDS,
we discover that many patients with other types also eventually
suffer from similar bleeding issues. So take copious notes and share
them when you get home.
Saturday, August 2, 8:30am-9:30am
---------------------------------------------------------------------
Your Eyes and EDS *
Dianna Driscoll, DO
Dr. Driscoll is acutely aware of the eye problems EDS patients
encounter. In fact, she and her husband not only specialize in EDS
complications, but Dr. Driscoll herself has EDS.
Saturday, August 2, 9:45am-10:15am
----------------------------------------------------------------------
EDS and Sleep Disturbances *
Brad Tinkle, MD
Do you get a good night's sleep? Most EDS patients do not. However
the body cannot heal itself if you toss and turn each night. If you
suffer from stress, worry, and pain, you must go to this session.
Saturday, August 2, 10:30am-11:15pm
----------------------------------------------------------------------
Migraines Give Me a Headache *
Leanne Burnett, MD
Do you suffer from migraines like most EDSers? Want some relief? In
this session, Neurologist Leanne Burnett discusses the
pathophysiology of migraines, their triggers, and treatment options.
You'll learn what lifestyle choices increase the risk of having a
migraine, treatment options when you have that pounding migraine, the
concept of daily preventative medication for migraines, and the
concept of analgesic rebound.
Saturday, August 2, 11:30am-12:15pm
----------------------------------------------------------------------
Nursing Perils and the ED *
Denise McGinley, RN
During this session, participants will gain heightened awareness of
the unique problems facing patients with EDS, and the sometimes
unusual presentations of life and /or limb-threatening illnesses. It
also focuses on commonplace medical practices and/or treatment
modalities that can spell disaster for EDS sufferers.
Saturday, August 2, 1:15pm-2:00pm
And this year for the first time we will have a "Conference
Counselor" available. You may sign up for individual time at the
start of the conference & if filled, additional hours may be added.
Additionally, she will be available for emergency situations.
All of these times may of course, depending on the doctors' schedules
may be subject to change & are really only a part of the list of
doctors confirmed to attend.
There is also a HUGE selection of activities & sessions scheduled to
kids & teens ONLY so that they may have their very own time to bond &
discuss issues that pertain to them only, especially things that they
may not be able to discuss with other adults or their parents. There
are of course impartial, educated adults to oversea these groups.
The vendors that are coming are also just awesome. Some new, some
that have been a time or 2 before & some that just don't ever miss;
including "Silver Ring Splints", Sola Jet dry wave massage beds (wait
until you try one of those........... OH, just heaven, how about free
massages? And, if you've never tried on a pair of Z Coil shoes, to
many of us (myself included) you haven't lived yet. We will also be
having reps from many companies. giving out tons of products of all
different types & goodie bags full of awesome things & lots of it!
We also have a company called GenTAC coming. They will be collecting
samples, at no cost to you for research basically for VEDS.
Significant hope is held out that amazing research can be done with
this amount of samples that will, of course, result in results that
can serve to help those with VEDS.
* We will have some great energy work from therapeutic chiropractors,
all included in your registration, as are ALL of the following@
* 12-15 PT CEUs and Nursing CEUs will again be available.
* We'll have a pain doctor who will be setting up individual
appointments.
* We have the Social Security representatives with individual
appointments.
* We have Binder and Binder Disability Lawyers.
* How about this........We have exciting breaks, like make your own
smoothies!!
* And, the banquet will be like none other ever before! We have the
best entertainment ever, including an entertainer/singer/pianist from
the Princess Cruise Lines.
All in all, you truly, I'm sure would like to try to make this trip a
priority this year, especially now that we have gone back to having
the conferences every 2 years. The last one was in '06.
The Conference will be held at the magnificent & very accessible
Renaissance Hotel in Houston , Texas , July 31-August 2, 2008, though
there is so much planned, that we have dramatically spilled over into
Thursday. I mention this, because we generally don't really get
started until Friday. Although all medical sessions, as always will
not begin until Friday. But there is just so much great stuff going
on, on Thursday, that if you can, try to make it there a day or so
earlier. And as always, there is so much to do in Houston that we
have a separate committe that has been working long and hard getting
us discounted passes to so many great adventures while you're in
town.
Also know that the second part of early registration has been
remained at $225 for the conference. And International registrations
will remain at $200, the last I heard. Please confirm that when you
sign up, which you can easily do by getting your form right online,
printing it out & faxing it right to the main office in L.A. It
couldn't be easier.
I hope to hear from many of you soon, but don't wait too long, as
it's filling up fast & last time we had a TON of people show up on
the day of the conference & it was surely a challenge to try to fit
everyone in & we surely didn't want to turn anyone away. We scurried
to re-prints tons of schedules, people were kind enough to share
things & somehow we made it happen. But we surely did run out of
hotel rooms. But the hotel has made arrangement for an alternative
hotel closeby in case we run into trouble, but please try to get
yourself registered in time to make a reservation at the host hotel.
Believe it or not, they have given us the amazing rate of $109/night!
If I can be of any assistance, answer any questions, please, please
do not hesitate to contact me. I'll be answer you, or find the right
person to answer you!
lisa.cherry2sky@...
I hope to hear from many of your soon & see you in Houston!
All the best, Lisa Schoenberg
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