Tag: Meeting

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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

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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

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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.

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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.
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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.

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Video for the presentation is at:
YouScript Video Page

 

 

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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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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.

[eventlist]
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[calendar]
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.

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