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.

 

 

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

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

This is part 1, 1hr 34min long

Part 2, 10mins

Part 3, 7 mins

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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Shane Robinson, Exec Dir EDNF 12/12/13

The download link works.
Download link:
Shane Robinson video


Shane Robinson video

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://www.eds-nyc.com/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.

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.

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 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.