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.


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Here is the link for Lara’s presentation slides


Video download link:

Here are the pictures from the meeting:

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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

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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



Link to download video:

Here are pictures from the meeting:

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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
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Part 2, 10mins
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Part 3, 7 mins
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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

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

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:

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.


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