Medical Marijuana Presentation

Jeremy Spiegel, MD gave a wonderful presentation about medical marijuana, its regulatory history and current medicinal uses recently. He was kind enough to rerecord the presentation and provide the slides.

To watch the slides with his narration click the link below, which will take you to another page. On that page, the bottom left corner has the Triangle Play button, and the bottom right corner has the Next Slide button, (which is also a Triangle Play shape). You must click the Next Slide button after each narration. This is the Narrated Presentation Link.

These are the Medical Marijuana Slides alone.

 

EDS SPECIAL Event Washington Square Park, Sunday, May 20, 2018

EDS special event

Connect Our Tissues! NYC EDS Awareness Photo Shoot and Social Event

Celebrate EDS Awareness Month 2018 at our EDS community social event
Washington Square Park
Sunday, May 20 from 2:00-4:00
Stand up and be counted! Connect Our Tissues in group photo session to raise awareness—globally.
We will have:
Free EDS Awareness T-Shirts, streamers, and signs
Light refreshments
Group and individual photos
Medical students and doctors are invited
Representatives from:
EDS-NYC
Long Island EDS Support Group
The Ehlers-Danlos Society
RSVP for T-shirt size:
Please RSVP and select your free T-shirt size and grant a photo release.
T-shirts will be provided to the first 100 registrants who arrive at the event before 3 PM.
If you RSVP, we will have one waiting for you. However, no show, no tee.
Driving directions:
Washington Square Park is in the heart of Greenwich Village in New York where 5th Ave ends at Waverly Place. Street parking is limited but there are underground garages in the area.
Subway:
A, C, E and B, D, F, M to West 4th St
R, W to 8th St.-NYU
6 to Astor Place
1 to Christopher St.
Rain plans:
In the event of rain we will hold the event at the American Museum of Natural History at Central Park West & 79th St. We will announce via email and web page EDS-NYC.com by 10 AM should plans change.

Collagen Disorders In The News: Tommy Pham

A few years ago, you would have been hard-pressed to recall any mention of “collagen disorder” or “collagen disease” anywhere in the media.

Awareness of EDS and related disorders is growing. Take Tommy Pham — who, ten years ago, was one of Major League Baseball’s top young prospects. He began experiencing vision problems — and his hitting ability disappeared with it. He wore glasses but they gave him no relief. His once promising career appeared all but over.

Pham was eventually diagnosed with keratoconus: a “collagen disease” that causes corneal degeneration, herniation and blindness.

(Sound familiar, zebras?)

Read the rest of the story and Tommy’s incredible recovery by clicking the link. Thanks to Bleacher Report and CNN for this great piece.

EDS-ers In The News: Melanie Hartshorn

https://www.chroniclelive.co.uk/news/north-east-news/heartbreaking-setback-melanie-hartshorn-hopes-14322092

I have been following Melanie Hartshorn’s story for quite some time.

She suffers from hEDS as well as severe CCI (cervial-cranial instability). Melanie has lived bed-bound, unable to lift her head due to constant dislocations. This has not stopped her.  Melanie recently graduated from college, having taken all her classes and exams lying on her stomach on a gurney or bed.

Melanie had spinal fusion and Chiari surgery a few months ago in Barcelona.  Although she had hoped to spend more time upright, has hit a setback with her physical therapy allocation funds and is now only able to spend a few hours upright daily.

Melanie is an extraordinary woman who has been very vocal and visible about about EDS in the UK media. She is an example of what all of us can accomplish despite our limitations. Please consider contributing to her Go Fund Me, if you are able.

To donate, visit www.gofundme.com/melanie-s-mission

Fashion No Longer Hiding Disability

http://www.bbc.com/news/entertainment-arts-43130155

Beginning to see more and more stories in the media about differently-abled inclusiveness in fashion.  Nice piece here from the BBC about London Fashion Week, featuring Clara Holmes, a fashion blogger with disabling EDS.  NY Fashion week also made a point this year to feature differently-abled bodies.

First Ever Models With Disabilities Grace The Catwalk In New York Fashion Week

There is also an up-and-coming model with Classical EDS, Sara Guerts.  

 

Ehlers-Danlos Society Announces $1 Million Endowment

Anonymous donor presents $1 million gift to The Ehlers-Danlos Society to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS).

The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an international research network of leading physicians, geneticists, and other health professionals devoted to finding the underlying genetic markers for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). The anonymous gift of $1 million dollars, represents the largest individual gift in the history of hypermobile EDS research.

“Because hypermobile Ehlers-Danlos lacks a known genetic cause, this truly has the potential to be a transformational gift,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society, a global leader in Ehlers-Danlos research, collaboration, and support.

“Through our donor’s extraordinary generosity, we are finally able to launch a virtual ‘moonshot’ in the advancement of our understanding into the most prevalent—and often most vexing—form of the Ehlers-Danlos syndromes,” declares Bloom.

“Although our 29-year-old daughter has remarkable coping ability and good medical support, she is in constant pain. She also has fatigue, nausea, sleep disturbance, and anxiety. Everything she does or plans is affected by this condition,” emphasizes the donor.

“No others in our family have hEDS or HSD that we know, but I feel as if we all have it, because we think of her every day. At the same time, as I’ve learned about hEDS and HSD, I’ve become concerned not only about our own daughter, but also for the many people suffering from these problems around the world. The severity and prevalence of these syndromes is greatly underappreciated. It is possible that hEDS and HSD are a collection of distinct and different genetic syndromes with similar manifestations. If so, it’s important we understand this so we can pursue the appropriate research for each condition and make the best recommendations about family planning,” continues the donor.

Visit www.ehlers-danlos.com for more information. 

Happy 2018!

Hello fellow zebras!

My name is Jen Ryan (hEDS) and Kurt has kindly “turned over the keys” to the site so that we can begin to revamp it.

The idea is to provide a steady stream of articles, information, links — and anything else we can thing of — to help you live better in NYC with Ehlers-Danlos Syndrome.

My four-year journey since finally being diagnosed with hEDS has been equal parts enlightening and taxing. We live with a difficult, intractable, mostly untreatable condition that manifests itself differently in each one of us.   I am a member of every EDS message board or forum that the internet has to offer, and the vast majority of posts from people with EDS read  like this:

  • Doctors don’t listen to me.
  • Nothing helps my pain.
  • I am miserable and alone.
  • Nobody believes me when I tell them I’m sick.

These are all unacceptable to me.  Nobody with EDS should be miserable, alone, in pain or without compassionate care.

We are very lucky to live where we do.  There are a lot of clinics and doctors in New York City who not only treat EDS, but who are willing and interested in learning about it.  I have been in NYC emergency rooms where once I told the staff my diagnosis, every nurse, intern and resident came to see me, touch my skin and ask me questions.  I have been helped by doctors who didn’t know what EDS was but ended up studying it —  providing novel and helpful treatments.  I have talked with fellow Zebras about their experiences and found a deep camaraderie through our similar struggles.

So lets do this together.  Lets fight together for better understanding and care of EDS in New York City.  We owe it to ourselves and to each other to make sure nobody with EDS suffers. We deserve happiness and good health. I promise that despite our unique challenges,  both are possible.

Please check this space often for articles, links, new speakers for our lecture series and meet-ups.  I look forward to the journey with all of you!

 

Jen Ryan

Astoria, NY

 

Let’s Update the EDS Friendly Doctor List

Please share the doctors who are currently helping you–and you will help the group. Everyone has horror stories from doctors who just don’t get it, and this list is meant to alleviate any more of those.

The old list got  rather stale. We are starting from scratch, so please enter every doctor who helps you and is currently practicing in the NYC area.

The survey has 10 questions. Please go through the survey once for each doctor you recommend.

Important: If you think a doctor would be willing to speak to one of our meetings please mention that in the notes section, which is the last question. I will follow up with you and discuss next steps.

Please click on This Link, or click above–the “Recommend a Dr.” menu item above.

 

Lara Bloom talk for Nov 22, 2016

Lara Bloom, the Co-Executive Director of the Ehlers-Danlos Society, spoke on Nov 22, 2016. In her remarks she described the mission of the new international charity, The Ehlers-Danlos Society (previously EDNF), and the process of the international symposium from May 2016.

The video is 1 hour 35 minutes.

 

[videojs mp4=”https://s3.amazonaws.com/streamfield/LaraBloomNov22%2C2016web.mov”]

 

Here is the link for Lara’s presentation slides

lara-ehlers-danlos-society-mission-talk

Video download link:

https://s3.amazonaws.com/streamfield/LaraBloomNov22%2C2016web.mov

Here are the pictures from the meeting:

img_5692 img_5690 img_5688 img_5683

The Alexander Technique with Ann Rodiger and Laura Tuthall, Nov 12, 2016

The Alexander Technique (AT) is an educational method that helps a student develop awareness of their body and habitual patterns, enabling them to make safer, more efficient physical choices. With the help of a teacher, the student begins to learn how his or her body functions, and takes on an active role in deciding how to use it. Throughout each lesson, the teacher offers verbal instruction and hands-on guidance. Making small adjustments to how the student is thinking of and using his or her body can make a big difference in pain, fatigue, and injury. Over time, coordination improves and students learns how to “direct” their bodies during movement and at rest.

For those with EDS, a major benefit of AT is the reduction of pressure on the joints and thus the redistribution of muscular tone. By mastering a pliable musculature instead of gripping—which is a very common response to instability—students improve alignment naturally and gradually and avoid forcing “good posture”. As muscle tone spreads evenly and appropriately through the body, knots are released and passive areas are activated. As their awareness increases, students learn how to find the “middle ground” in every movement, so as not to extend their ligaments even further and damage them more. Alexander Technique teachers who are familiar with EDS can help hypermobile students within their instability, creating greater fluidity and ease. While far from a cure, AT lessons with a qualified, informed teacher can dramatically improve the quality of life for EDS individuals.

The video is 36 minutes long

[videojs mp4=”https://s3.amazonaws.com/streamfield/AlexanderTechnique-EDSweb.mov”]

For more information call Ann Rodiger 646-526-6515

Links to two 2-page papers on the Alexander Technique and EDS by Ann Rodiger and Laura Tuthall

ann-rodiger-alexander-technique-my-good-fortune-eds-story

laura-tuthall-alexander-technique-from-an-eds-perspective

Link to download video:

https://s3.amazonaws.com/streamfield/AlexanderTechnique-EDSweb.mov

Here are pictures from the meeting:

img_5663 img_5664 img_5665 img_5666 img_5667 img_5668 img_5669 img_5670

Dr. Norman Marcus Pain Institute presentation

Dr. Norman Marcus launched his eponymous Pain Institute in 1998. He is the pioneering author of two books: Freedom from Pain and End Back Pain Forever. A past president of the American Academy of Pain Medicine, Dr. Marcus is a member of five professional societies and has presented over 100 lectures about diagnosing and treating pain to audiences throughout the world.

In 1977, Dr. Marcus co-founded and directed the first pain center in NYC at Montefiore Hospital. He went on to establish and direct pain centers at Lenox Hill Hospital in NYC (1983-1998) and The Princess Margaret Hospital in Windsor, England (1997-2001). Currently he is both the Director of Muscle Pain Research and an Associate Professor of anesthesiology and psychiatry at the NYU School of Medicine.

Dr. Marcus is a media favorite having appeared on The Today Show, CBS This Morning, Good Morning America, Fox & Friends, and The Early Show.

April 20, 2016, Dr. Marcus gave a presentation to our group.

Download the presentation here.

The video had some issues however the 105 slides from the presentation cover pretty much everything he said.

Dr. Albina Tamalonis talk: “Less Is More: Meeting the challenge of living happily with EDS”

This is part 1, 1hr 34min long
[videojs mp4=”https://s3.amazonaws.com/streamfield/DrAlbina1.mp4″]
Part 2, 10mins
[videojs mp4=”https://s3.amazonaws.com/streamfield/DrAlbina2.mp4″]
Part 3, 7 mins
[videojs mp4=”https://s3.amazonaws.com/streamfield/DrAlbina3.mp4″]

Monday, November 9, 2015 talk on coping strategies for EDS by Dr. Albina Tamalonis, a therapist with EDS.

Living with the psychological challenges from the many limitations of EDS can be daunting to the person who has EDS, and their family and friends. The pains, restrictions, injuries, disappointments and feelings of embarrassment are hard to manage. This presentation will help with coping strategies to eliminate these issues and feelings. The focus is on hope, what strengths you have and living your life to the fullest now.

Helping people adjust to physical challenges by making a change in their thinking that less can be more. Less weight, less possibilities, less complexity and less rushing can be freeing. With an Ericksonian approach to therapy and active guided meditation this workshop will illustrate how a person can come to terms with the chronic EDS illness and reframe pain, uncertainty and insomnia. The workshop will end with an active guided meditation set to music.

Educational Objectives
1. To learn the essence of reframing for chronic illness,.
2. To learn Erickson’s guiding life principle of focusing on what is left in ones life rather than what is lost with any chronic illnesses.

Albina M. Tamalonis, Psy.D, is a licensed clinical psychologist with a full time private practice in NYC for over 25 years. She has one Masters degree in psychological research, one Masters degree in school psychology, and a Doctorate in child and adult clinical psychology. She treats people from 12 years of age and up, with an assortment of disorders. Dr. Tamalonis specializes in brief approaches to psychotherapy, which uses: meditation, relaxation and other mental techniques that alter consciousness to more easily help people change their ways of thinking and behaving. She uses active guided meditation that upgrades meditation to trance therapy to help her patients with many mind/body problems such as pain, insomnia, preparation for surgeries and healing.

Dr. Tamalonis has taught internationally at various professional societies around the world, and nationally at the American Society of Clinical Hypnosis, and the Myasthenia Gravis Foundation, to name a few. Dr. Tamalonis current interest is helping people with EDS and other chronic physical disorders, repetitive injuries and aging. She has special insight in EDS because she has it herself. Dr. Tamalonis has appeared on radio, television and a movie. She produces active guided meditation CDs with original music by her husband, Thomas Tamalonis-Olofsson. For more information about Dr. Tamalonis you can go to TherapySolutionsForChange.com.
——————

EDS Documentary NY Premiere and Q&A with writer/lead 8/19/15

Issues_with_my_TissuesWednesday night we screened the NY premiere of Issues With My Tissues with Lara Bloom at the 92nd St. Y

Lara Bloom, the CEO of EDS International, brought her infectious enthusiasm to the meeting and answered questions about this truly inspirational film of trials and triumph. Shane Robinson, the Executive Director of EDNF also attended.

“The documentary follows Lara Bloom’s journey as she became the first person with EDS to walk the London Marathon and features interviews with medical professionals, families with EDS and individuals who have suffered from misdiagnosis.” – IMDB

Watch it here now! 48 minutes

Why Some Meds Don’t Work – April 23, 2015

Video for the presentation is at:
EDS-NYC YouScript Video Page

Ever feel one of these?
o anxiety
o ‘brain fog’
o dizziness,
o forgetfulness,
o headache,
o GI problems,
o seizure

Or have you ever said…
o “Certain medicines don’t work for me.”
o “I’m sensitive to many medications.”
o “I need a very low starting dose.”

Then come to our next meeting for the talk titled:
“Why some medications don’t work – or make you feel worse – and what you can do about it.”

Genetic differences in how bodies metabolize drugs can cause all these problems. With genetic testing we can identify bad combinations of specific medicines and certain genes, find alternative meds, and avoid dangerous side effects.

We are extremely fortunate to have Dan Doherty, of Genelex, come speak about the YouScript Personalized Prescribing System, the only medication management system that assesses the cumulative effect of a patient’s genetics and entire drug regimen to determine adverse drug event risk and recommend safer alternatives.

EDSers tend to take a number of meds which tends to increase the risk of side effects. Learn what’s going on and, more importantly, what to do about it.

Dan, has been with Genelex since 2006 helping thousands of clinicians improve patient safety with personalized prescribing. He’s had a unique opportunity to speak regularly with patients and heard the impact CYP450 testing has had on the quality of their lives. He previously worked onsite 24/5 managing the daily routine for residents in a non-profit group home, seeing both the positive and negative impacts of psychiatric medication management on a daily basis. He’s previously spoken at The Children’s Coalition Against Pediatric Pain, The Mastocytosis Society and the Chiari & Syringomyelia Foundation.

Company overview:
Genelex’s high complexity, CLIA laboratory has more than 25 years of DNA testing experience and in 2000 became one of the first laboratories in the US to provide personalized prescribing testing for pharmacogenetics. When used while prescribing, YouScript can help providers prevent adverse drug events, improve treatment and reduce healthcare costs.

——————

Video for the presentation is at:
YouScript Video Page

 

 

EDS-NYC Support Group Meeting September 30

Tuesday, September 30, at 7:00-9:00 EDS-NYC-NYC will have a support group meeting at the 92nd Street Y, 1395 Lexington Avenue, (between 91st and 92nd)

Michael Bihovsky, a chronic illness advocate and activist best known for his integration of health awareness and musical theater will serve as a guest facilitator. He is the co-founder of the Philadelphia POTS support group, and writes for Stanford Medical Journal’s SCOPE project, including the article “Live Because: Living a fuller life with chronic illness.”
www.michaelbihovsky.com

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Please RSVP via email as estimating turnout helps us prepare.
——————
Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.

——————
Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Tuesday, September 30, at 7:00-9:00

www.eds-nyc.com

Pain Management speaker May 7

Wednesday, May 7, 2014, at 7PM, noted pain management researcher Dr. Barbara Siminovich-Blok will join us to discuss effective pain management strategies. (Rescheduled from April 9)
DrSimonovichBlok
Dr. Siminovich-Blok is a Naturopathic Doctor and a Licensed Acupuncturist for the States of CT and NY. She specializes in pain management, sports, integrative medicine and nutrition. She is a researcher and a clinician in Integrative Medicine at NYU Langone Medical center, Rusk rehabilitation/Hospital of Joint diseases. Her research is oriented to pain management and rehabilitation. Dr Siminovich-Blok has experience practicing integrative medicine at inpatient and outpatient settings and has a specialized private practice in midtown (Equilibrium LLC).

Having been selected for the only hospital based residence for Naturopathic Physicians in Yale/Griffin Prevention Research center, Dr. Barbara Siminovich-Blok received her degree in Naturopathic Medicine and was the recipient of the Douglas Lab Clinical Excellence Award. She possesses two Master degrees in Biochemistry and in Biotechnology. Her Bachelor Degree is in Chemical Engineering. In 2010, she graduated Summa Cum Laude with an MS in Acupuncture from the University Of Bridgeport (UB) Acupuncture Institute.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.

Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Wednesday, May 7 at 7PM at the 92nd St. Y (on Lex).

EDS-NYC Meeting with EDNF Exec Director Thur Dec 12

Thursday, December 12, at 7:00PM, Shane Robinson, Executive Director of the Ehlers Danlos National Foundation, will join us for our December meeting. He brings news of:

  • o The EDNF Center for Clinical Care and Research at GBMC,
  • o National Convention highlights,
  • o Current research efforts, and
  • o Plans for the future

This promises to be one of the most informative meetings concerning a broad range of policy and activities on a national scale. Please join us to learn about the dramatic efforts currently taking place around the country.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.

Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Thursday, December 12th, 7PM at the 92nd St. Y.

eds-nyc.com

Beighton v Brighton

Diagnosing EDS can be confusing. Here’s a little primer on two diagnostic tools for joint hypermobility with names that are way too similar.

The Beighton score
The Beighton score measures joint flexibility and consists of a series of nine tests. Each test carries a score of one point.

  • Hands flat on the floor with your knees straight?
  • Bend each elbow backwards? (1 pt each)
  • Bend your knee backwards? (1 pt each)
  • Bend your thumb back on to the front of your forearm? (1 pt each)
  • Bend your little finger 90 degrees, towards the back of the hand? (1 pt each)

Different rheumatologists interpret the score differently. In a survey of 319 rheumatologists 185 set the threshold at 5 while 92 found 3 sufficient, 3 required 1, while 35 would not commit.
The Brighton criteria
The Brighton criteria casts a wider net and incorporates the Beighton score while also accounting for other symptoms, such as joint pain, dislocated joints, and how long you have had symptoms. Diagnosing is something of a Chinese menu activity.

Joint hypermobility syndrome may be diagnosed if you have:

  • two major criteria or
  • one major criteria and two minor criteria or
  • four minor criteria or
  • two minor criteria and a close relative, such as a parent, who has been diagnosed with joint hypermobility syndrome

Major Brighton criteria

  • Having a Beighton score of four or more ever
  • having joint pain for longer than three months in four or more joints

Minor Brighton criteria

  • Having a Beighton score of one to three, or having a Beighton score of zero to three if you are over 50 years of age
  • having joint pain for longer than three months in one to three joints, or back pain for longer than three months, or spondylosis (spinal arthritis) or spondylolisthesis (where one small bone in your spine slips forward over another bone)
  • dislocating, or partially dislocating, more than one joint or the same joint more than once
    having three or more injuries to your soft tissues, such as tenosynovitis (inflammation of the protective sheath around a tendon) or bursitis (inflammation of a fluid-filled sac in a joint)
  • having Marfanoid habitus – being tall and slim and having long, slim fingers
  • having abnormal skin, such as thin and stretchy skin
  • having eye-related symptoms, such as droopy eyelids or short-sightedness, having swollen and enlarged veins (varicose veins), or a hernia (when an internal part of the body pushes through a weakness in the surrounding tissue wall) or a rectal or uterine prolapse (where an internal organ slips down from its usual position)

Hypermobility has a blurry boundary with EDS. Some say there is no boundary, others say there is one but just can’t tell you where it is.

For more information see this EDNF article or this NHS article.

EDS-NYC Exclusive Obamacare Explained Wed Nov 6

Wednesday, November 6, leading healthcare expert Shahriar Kahn will explain the Affordable Care Act, aka Obamacare. He will discuss the policy issues and implications for EDS at our next meeting 7pm November 6th at the 92nd St. Y. Shahriar has been instrumental in helping set up the Rhode Island exchange.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

——————-
Shahriar Khan bio:
Shahriar Khan studied and worked as a biochemistry researcher at Harvard and MIT (where he earned his S.B.). He spent a great deal of time working in community health centers and hospitals, ultimately getting into medical school twice. However, he chose to study health policy instead to make sense of rapidly changing landscape in the health care world. As a Ph.D. student and teacher at NYU, Shahriar continues studying healthcare reform, medicine, and biotechnology.

Recently, he worked internationally to implement a draft national biotechnology policy in Bangladesh to align research with clinical and agricultural needs. In the US, Shahriar worked on implementing Obamacare as a researcher/practitioner in the state of Rhode Island. He has worked on insurance rate reviews, plan choice, and hospital quality improvement measures. His experience positions him well to explain what the changes mean for us.

These issues create both opportunities and challenges for the EDS community and others with orphan diseases. Learn about new paradigms in health care and insurance, ways that you can stay ahead of the curve, and how to prepare for new practice models in medicine.

——————-
New RSVP method
RSVP right here on this link
We added a forum on our web site. Early signs show it may work.
Almost 200 people have registered with the web site.
http://3.88.127.49/forums/topic/november-2013-meeting/
Please RSVP in the forum so we can estimate attendance and prepare accordingly.
Post questions there for our expert as well.

——————-
Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the nearest subway is the number 6, which stops at 96th St.

——————-
Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Wednesday, Nov 6 at 7PM.

EDS-NYC Exclusive Demo at Bent Pilates Sep 6

EDS-NYC will have a hands-on Pilates demonstration at Bent Pilates Friday, September 6th from 5pm to 7pm.

The demonstrations will start when a group is ready and take roughly half an hour so come any time and leave when you are finished.

We arranged this meeting after some members have raved about the benefits they received from Pilates. According to Cyrilla, “Teri researched EDS thoroughly to create a program for me. In April, I was such a bendy mess I hurt myself just lying on a machine. Now I’ve developed muscle, sublux much less frequently, and have more energy for daily life.”

The demonstration will involve bed-like machinery with springs, not mats on the floor. See the web-site for more information.
www.bentpilates.com

Bent Pilates Studio
754 Ninth Ave. 2nd floor
Between 50th & 51st.

When executed correctly Pilates:

  • Corrects postural problems
  • Increases core strength/stability
  • Creates freedom of movement
  • Enhances balance, strength, and flexibility
  • Heightens body awareness
  • Compliments other methods of exercises/sports performance
  • Improves coordination and circulation
  • Prevents injuries
  • Develops longer & leaner muscles
  • Flattens, tones and strengthen the abdominal area

Please RSVP so we can estimate attendance.

All are welcome, especially those who are not yet diagnosed but have questions.

This event is another in our continuing effort to provide useful tools to enhance joint stability and practical techniques to avoid injury, both of which improve the quality of life for our members. I hope you can join us.

Directions:
Bent Pilates is up a flight of stairs to the second floor. The stairs are not in great shape.
The closest subway is the C/E line 50th St Station.

You can RSVP in the form below.
[contact-form][contact-field label=’Name’ type=’name’ required=’1’/][contact-field label=’Email’ type=’email’ required=’1’/][contact-field label=’Comment’ type=’textarea’ required=’1’/][/contact-form]

EDS Treatment with Nutritional Supplements

One of our members just forwarded the most interesting article, “A Novel Therapeutic Strategy for Ehlers-Danlos Syndrome Based on Nutritional Supplements.”

The idea is that nutrition may be a major factor in the pathogenesis of many disorders once thought to result from the effects of defective genes alone. Additionally many of the symptoms associated with EDS are also characteristic of nutritional deficiencies.

Well, if the idea sounds worth reading try the five page full article.

Physical Therapist To Headline June EDS-NYC Meeting

We are excited to have Jessica Graziano speak at our next EDS-NYC meeting Monday, June 10, 6:30 PM at the 92nd St Y, 1395 Lexington Ave, NY, NY 10128.

Jessica is a physical therapist with experience with many EDSers. She works at the Hospital for Special Surgery’s Sports Rehabilitation and Performance Center.

She received her Bachelors degree in Exercise and Sports Science at the University of North Carolina- Chapel Hill where she played for their Division I softball program.  She later received her Doctorate Degree in Physical Therapy at New York University in 2007. She currently holds 2 certifications; Certified Strength and Conditioning Specialist received through the National Strength and Conditioning association and her Functional Movement Screen Certification.  Her interests are in pediatric sports medicine and injury prevention. She currently serves on the executive council of the National Strength and Conditioning Association’s Youth Special Interest Group where they continue to advocate for injury prevention strategies in the Young Athlete.

——–

This meeting is in a different room on the 2nd floor.

Same entrance, you can get to the room 2 ways:

1) Take the stairs up in the box office, use the right side door and make a left the room is on the right down the hall.

2) Take the elevator up on the 91st building (just down the stairs from our old room and the room is on the right.

All are welcome, especially those who are not yet diagnosed but have questions.

The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets.  For transportation information, the nearest subway is the number 6, which stops at 96th St.

EDS-NYC Meeting Wednesday, May 1, 6:00 PM

EDS Awareness month is upon us. Come join us at the May EDS-NYC local support group meeting Wednesday, May 1, 6:00 PM, at 1395 Lexington Avenue, room S100, New York, NY.

The agenda is to develop strategies to raise awareness among key constituencies such as:

  • Informing doctors, and other healthcare providers
  • Gaining media coverage
  • Other awareness-related events

All are welcome, especially those who are not yet diagnosed but have questions.

The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets.  For transportation information, the nearest subway is the number 6, which stops at 96th St.

Please RSVP so we can estimate group size. Please include desired snack food for brainstorming at the meeting. I’ll pick up the most popular item, provided it is not lobster stuffed with caviar atop a pyramid of filet mignon.

Mast Cell Activation Syndrome 101

Noted Allergist/Immunologist Dr. Anne Maitland spoke for almost 2 hours about mast cells, EDS, allergies versus hypersensitivity, and much, much more April 2, 2013.

So far the Ustream link is ready to go:

http://www.ustream.tv/channel/eds-nyc

You need to create a Ustream account, but that’s easy or you can log in with Facebook.

The 24 minute segment, which currently is the bottom of the three segments on the list, is the first one. That starts with the introduction.

We are all extremely grateful to Dr. Maitland, who took so much of her time and was so generous with information. She mentioned that two years ago there really was no research on this mast cell activity, which makes this pretty cutting edge.

I hope to have the other copy of the video up in good time, but seeing the good quality of this one really does sap my current motivation.

 

Dr. Maitland to address EDS-NYC Meeting Tuesday, April 2, 6:00 PM

Dr. Anne Maitland, the top expert in the NY area on EDS and Mast Cell Activation Disorder, will speak at the April EDS-NYC local support group meeting Tuesday, April 2, 6:00 PM, at 1395 Lexington Avenue, room S100, New York, NY.

Dr. Maitland was named one of New York Times 2011 Super Doctors and one of America’s Top 21 Women’s Doctors by Lifescript.com in 2009. She is a Fellow of the American College of Allergy, Asthma and Immunology and a member of the American Academy of Allergy, Asthma and Immunology.

Anyone who ever had an unexplained or unusual  allergic reaction should come.

We are extremely fortunate to have her come. If you only make it to one meeting this year, this is it.

We welcome all, especially those who are not yet diagnosed but have questions.

The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets.  For transportation information, the nearest subway is the number 6, which stops at 96th St.

EDS-NYC Meeting Monday, February 25, 6-8:30 PM

The EDS-NYC local support group will meet Monday, February 25, 6:00 PM, at 1395 Lexington Avenue, New York, NY.

We welcome all, especially those who are not yet diagnosed but have questions.

Again we meet at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the nearest subway is the number 6, which stops at 96th St.

Please RSVP via comment (or email) so we can estimate group size. The group is growing rapidly and outgrew our old space. I may get swamped and not reply to each RSVP, but the count is important.

As our numbers grow we really have the opportunity to chart a course for this group and coordinate efforts to really help one another on a larger scale. This meeting will focus on ideas and goals, skills and resources, unmet needs and opportunities, whatever priorities we can agree to.

  • The EDS-NYC Dr. list continues to be well received. Are there other resources we could pool and provide?
  • May will be EDS Awareness Month. Would anyone like to help a bit on coordinating our efforts?
  • The feedback from Dr, Jessica Davis’s talk last month was extremely favorable. Perhaps we could find help arranging more speakers?

This is a time of many opportunities. Now is a chance to pick a few priorities, and plant the seeds for more good meetings.

Hope to see you there,

Kurt

EDS-NYC Meeting Wednesday, January 23, 6-8:30 PM

The EDS-NYC local support group will meet Wednesday, January 23, 6:00 PM, at 1395 Lexington Avenue, room S100, New York, NY.

We welcome all, especially those who are not yet diagnosed but have questions.

We will have a speaker, Dr. Jessica Davis. Dr. Davis is Chief of the Division of Medical Genetics as well as an Associate Professor of Clinical Pediatrics at Weill Cornell Medical College and Associate Attending Pediatrician at New York-Presbyterian Hospital and the Hospital for Special Surgery.

This is a new address for the meeting, the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the nearest subway is the number 6, which stops at 96th St.

EDS-NYC Meeting Tuesday, December 4th

Tuesday, December 4, 2012, 6-8:00 the EDS-NYC support group will meet at 40 Exchange Place, Suite 1600. Hope to see you there.
We welcome all, especially those who are not yet diagnosed but have questions.
We will discuss the most useful resources we have found and share information with the group.
Our EDS-friendly recommended doctor/PT list is up to 88 names. We will update the list in the meeting.

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The address is one block south of Wall St. at the corner of William St. and Exchange Pl. It is also two blocks east of Broadway.

Public transportation is the best way to get there based on traffic and limited parking.

Subway:

      One block south of the Wall St stop on the 2/3 line.

 

      Two blocks east of the Wall St. stop 4/5 line.

 

      One block from the Broad St. stop on the J/Z line.

 

    And it’s close to the Rector stop on the #1 and R lines.

Take the elevators on the right side of the lobby to the 16th floor. Room 1600 is clearly marked.

There are a couple steps out front of the building, but there is a service entrance to an elevator. Please send me a message if you need additional help or access is an issue.

Looking forward to seeing you there.