English only
2024
EDS Awareness Newsletter February 2024 – Chronic Pain Partners
EDS Awareness Newsletter May 2024 – Chronic Pain Partners
Complicated – the must-watch documentary on Ehlers-Danlos Syndrome
Filmmaker Andrew Abrahams on the New EDS Documentary ‘Complicated’
2023
Mitch Martow on his EDS journey and the documentary Bend or Break – Chronic Pain Partners
Author Jessica MacLean on how writing saved her and what she learned from her ancestors – Chronic Pain Partners
Chronic Pain Partners Newsletter January 2023
Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients – Chronic Pain Partners
Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds – Chronic Pain Partners
EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS (Video) – Chronic Pain Partners
Chronic Pain Partners Newsletter February
Christoph Glötzner, the Young German Paralympian, Racing Towards Gold! – ABILITY Magazine
PT Elan Schneider on Neuroplasticity and New Approaches to Treat Chronic Pain – Chronic Pain Partners (+ Video)
Chronic Pain Partners Newsletter March 2023
Chronic Pain Partners Newsletter April 2023
Kenton Hall – My Bipolar and Getting Where I Needed to Be – ABILITY Magazine
Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS – Chronic Pain Partners
Folate-dependent Hypermobility: Discussing Tulane’s Recent Paper With Their Scientists – Chronic Pain Partners
EDSed Episode 4: Dr. Jacqueline Wolf on GI symptoms & Endometriosis – Chronic Pain Partners
6 popular people with EDS – Chronic Pain Partners
Meet Elin, The German Sesame Street’s First Muppet with a Disability – ABILITY Magazine
New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations – Chronic Pain Partners
We Are Visible Too, Episode 2: Caitlin O’Donnell (Video) – Chronic Pain Partners
Mastering Appointments Successfully with EDS – Chronic Pain Partners
Filmmaker Suri Ellerton, Her EDS Journey & New Film Highlighting The Challenges Of Disabled Parents – Chronic Pain Partners
Chronic Pain Partners Newsletter July
September EDS Newsletter
Dysautonomia Patient Guide – EDS Awareness
December Chronic Pain Partners Newsletter
MCAS Patient Guide – Chronic Pain Partners
2022
EDS & Aging Project – EDS Awareness
Zebra Club App Review – EDS Awareness
Interview with Meghan O’Rourke – EDS Awareness
Interview with Linda Bluestein – EDS Awareness
It’s about T.I.M.E. – ABILITY Magazine
Becoming a Proud Stutter (Article & Podcast) – ABILITY Magazine
Podcast with Jeannie Di Bon – Talking Community Engagement
EDS & Caregivers – Interview EDS Awareness
Interview with Adrienne Ferron on the challenges as a woman of color with EDS – EDS Awareness
Interview with Dr. Pradeep Chopra regarding the psychological and psychiatric aspects of the Ehlers–Danlos syndromes and hypermobility spectrum disorder – EDS Awareness
Dr. Pradeep Chopra: response to the paper on psychological and psychiatric aspects of the Ehlers–Danlos syndromes – EDS Awareness
July EDS Newsletter – Chronic Pain Partners
Interview with Dr. Norris on finding the genetic cause(s) for hypermobile EDS and much more – Chronic Pain Partners
Interview with Donna Sullivan about wrongful child abuse allegations and medically complex children – Chronic Pain Partners
Meghan O’Rourke and The Invisible Kingdom – ABILITY Magazine
Jules Machias about their EDS journey and new middle-grade book Fight + Flight – Chronic Pain Partners
Karina Sturm at the Hardy Mom Podcast talking about We Are Visible
Ehlers-Danlos Syndromes, gynecological complications & sexual health – Chronic Pain Partners
August EDS Newsletter – Chronic Pain Partners
Cherylee Houston – Writers and Performers with Disabilities & EDS – ABILITY Magazine
Suicide Prevention Month Q&A with Dr. Delaney and PA Sarah Cook about coping strategies and how to support people with chronic illnesses – Chronic Pain Partners
April Torres on her EDS journey, the mental toll it took on her and her book God is Hilarious: My rescue story – Chronic Pain Partners
September EDS Newsletter – Chronic Pain Partners
Where physical therapy ends and magic begins: Healy Physical Therapy and Sports Medicine – Chronic Pain Partners
EDS & Caregiving: an interview with Alice Agyemang, professional full-time caregiver – Chronic Pain Partners
Author Christie Cox about her new EDS book Holding It All Together When You’re Hypermobile – Chronic Pain Partners
October EDS Newsletter – Chronic Pain Partners
Release of Episode 1 of our new film series “We Are Visible (Too)”
Book Review: Holding It All Together When You’re Hypermobile – Chronic Pain Partners
Chronic Pain Partners Newsletter November 2022
Chronic Illness Advocate Brianne Benness about her EDS journey and #NEISVoid – Chronic Pain Partners
EDSed Episode 1: Norris Lab (Video): https://www.chronicpainpartners.com/edsed-episode-1-the-norris-lab/
Chronic Pain Partners Newsletter December
The 12 Gifts of Blissmas: This Holiday Season’s Gift Guide for the EDS Warrior – Chronic Pain Partners
ITVS & FWD-Doc Working to Improve Disability Representation On and Off Screen – ITVS
2021
Conversation with Ian Harding about ableism, disability language, future film projects and most kept secrets (part 2) – ABILITY Magazine
In the Business of Spreading Happiness: John’s Crazy Socks – ABILITY Magazine
Jameela Jamil: Advocate First, Actress Second – ABILITY Magazine
Disjointed Book Review – Rare Revolution Magazine
Together, we aren’t rare! Let’s talk about Ehlers-Danlos syndrome – ABILITY Magazine
Guest Interview mit Samantha Bowick
Finding a new purpose: Jonathan Ayers donates 20 million to protect wild cats – ABILITY Magazine
Guest interview with Beyond My Battle
Guest on the ‘Chronic Illness Support‘ Podcast with Sam Bowick – Topic Ehlers-Danlos Syndrome
Guest on the Patientworthy Podcast ‘Wait, how do you spell that?‘ – Topic Ehlers-Danlos Syndrome, my journalistic work and film
BYkids – seeing the world through a child’s eyes – ABILITY Magazine
Gaming for all: Disability, Accessibility and Representation – ABILITY Magazine
The battle for accessibility of New York City’s metro system – ABILITY Magazine
The deadliest disease in America – ABILITY Magazine
Podcast Sturm & Drang für NORD
Panel discussion and film screening of my film We Are Visible at the Canadian Commffest.
December Newsletter EDS Awareness
My life with EDS on Love What Matters
PR pieces:
New study finds brands must prioritize accessibility and inclusivity to reach people with disabilities – ABILITY Magazine
New feature for people with physical disabilities to control their TV with their eyes! – ABILITY Magazine
Google launches Live Captions on Google Chrome! – ABILITY Magazine
NBCUniversal announces unprecedented programming of Paralympic Games – ABILITY Magazine
Autism Awareness: Easterseals and Rafi Nova develop sensory-friendly masks – ABILITY Magazine
ULTRA-LIGHTWEIGHT INTELLIGENT WHEELCHAIR PHOENIX INSTINCT RECEIVES $1M AS WINNER OF TOYOTA MOBILITY UNLIMITED CHALLENGE – ABILITY Magazine
100,000 people with autism participated in study to uncovering genetic causes – ABILITY Magazine
2020
Fight Like A Warrior Blogpost about ‘We Are Visible’: https://www.fightlikeawarrior.org/post/we-are-visible-a-documentary-about-living-with-an-invisible-illness
Why I made a film about EDS — EDS Society
Why I raise awareness – for AwareCauses
The blog of the academic journal BMJ Medical Humanities published my review of the film “Who Am I To Stop It”
How My Ehlers-Danlos Journey Inspired Me to Create This Documentary – The Mighty
“Trust me, I am Sick” Review – Ability Magazine
100 years of service – Easterseals – Ability Magazine
Tom Steyer talks about his disability policy and more – Ability Magazine
#StayTheF**kAtHome – People belonging to the COVID-19 risk group speak out. – ABILITY Magazine
AB 2283: A Rare Disease Council and Ombudsperson for California’s Rare Disease Population – ABILITY Magazine
‘El Candidato’: A documentary about Bryan Russell, the first man with Down syndrome to run for public office. – ABILITY Magazine
Meet Haben Girma: disability rights advocate and first deaf-blind Harvard Law School graduate. – ABILITY Magazine
Vint Cerf — Co-creator of the Internet and Email (Video and Audio) – ABILITY Magazine
Accessibility and Inclusion: ‘This is who we are’ – PBS KIDS, a model for all media – ABILITY Magazine
How YAI, Next for Autism and Cure SMA are supporting their members during COVID-19 – ABILITY Magazine
‘Lego Oma:’ German grandma creates Lego ramps to access buildings and imagination – ABILITY Magazine
Disability Rights Activist Raul Krauthausen – ABILITY Magazine
Keith McArthur – ABILITY Magazine
Challenges and Chances: Navigating the US healthcare system – ABILITY Magazine
Athletes competing at the IRONMAN – ABILITY Magazine
Why this election is crucial for people with disabilities – ABILITY Magazine
The Bazelon Center for Mental Health: Supporting People with Mental Health Conditions – ABILITY Magazine
Ian Harding opens up about ‘Pretty Little Liars’, lupus and Germany — Teil Eins (Part 1) – ABILITY Magazine
A Doll Like Me — Every Child Should Feel Included – ABILITY Magazine
Disability, Sex and Adult Toys by and for People with Disabilities – ABILITY Magazine
2019
“Misdiagnosis: The Global Epidemic We Should Be Talking About” – an investigative article for The Mighty.
“Why disabled journalists should report on disability” – a commentary for The Columbia Journalism Review.
2018
My first documentary about the lives of previous and current residents of Laguna Honda’s Positive Care Unit in San Francisco is published.
“16 Things the people who decide who qualifies should know” for The Mighty
“12 easy ways to be a better friend to someone with a chronic illness” for The Mighty
“23 consequences of misdiagnoses people with EDS had to deal with” for The Mighty
“5 Career Paths That May Be Great for People With EDS” for The Mighty
“11 Must-Read Blogs and Websites for Ehlers-Danlos Syndrome Newbies” for The Mighty
“40 Brilliant Ways to Make Ehlers-Danlos Syndrome Medical Devices More Fashionable” for The Mighty
“Disability Advocate Belo Cipriani Creates Oleb Books, a New Publishing House for Writers With Disabilities” for The Mighty
“5 Strategies to Master a Day at School or Work With Ehlers-Danlos Syndrome” for The Mighty
“18 Gifts to Give Your Friend With Ehlers-Danlos Syndrome” for The Mighty
Firsts is a mini documentary series about several authors contributing to the book “Firsts – Coming of Age Stories by People with Disabilities” by Belo Cipriani.
Firsts – Episode 1: David-Elijah Nahmod
Firsts – Episode 2: Caitlin Hernandez
Firsts – Episode 3: Sam E. Rubin
All videos with descriptive audio for the blind and closed captions for the deaf
2017
“When I was challenged to share how I really feel about my EDS” for The Mighty
“Finding the humor in my husband buying me diapers” for The Mighty
2016
“What You See and Don’t See About the Woman in This Photo” for The Mighty
“To myself when I struggled to accept my Ehlers-Danlos Syndrome diagnosis” for The Mighty
“When a Doctor told me not to think about my Ehlers-Danlos Syndrome so much” for The Mighty
“Dear Ehlers-Danlos Syndrome – a letter from your host” for Patientworthy
“When a man at the airport noticed how much pain I was in” for The Mighty
Here’s What I Would Say To The Patients Who Are Being Told Their Disease Is “Not Real” for Global Genes
“HOW DOES IT FEEL TO BE A SECOND CLASS PERSON?” for strength/flexibility/health/EDS
“Tips for traveling from Europe to the United States while being chronically ill” for EDS Wellness
Medical article about the gene Tenascin-XB and the correlation with various Ehlers-Danlos types for EDS Wellness
“My struggle to feel deserving of love as a woman with chronic illness” for The Mighty
2015
One chapter of the book: “Our Stories of Strength – Living with Ehlers-Danlos syndrome“
“Why I Wish I Opened Up to the Flight Attendant About My Invisible Illness” in The Mighty:
“A long journey to diagnosis” for Suffering the Silence:
“How people look at you if you are using a wheelchair without being paralyzed” for the Zippy Zebra
“10 things EDS has taught me” for Patientworthy
2013
GRIESSL, Martin H., et al. Structural insight into the giant Ca2+-binding adhesin SiiE: implications for the adhesion of Salmonella enterica to polarized epithelial cells. Structure, 2013, 21. Jg., Nr. 5, S. 741-752.
2011
STURM, Karina U., et al. Crystallization and preliminary crystallographic analysis of an Ig-domain-encompassing fragment of the giant adhesion protein SiiE from Salmonella enterica. Acta Crystallographica Section F: Structural Biology and Crystallization Communications, 2011, 67. Jg., Nr. 11, S. 1371-1374.
