Page Title
This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.
Figure 2. (A) Representative hematoxylin-eosin stain of the filum terminale at lower magnification showing regions of dense cellularity (asterisks). Areas examined in hypermobile Ehlers-Danlos syndrome specimens with immunohistochemistry confirmed local inflammation. Common leucocyte marker CD45 (B), markers of microglial (CD68, C), and immunologically activated mast cells (CD117, D) were applied.
CTC Funded Research & Initiatives
The CTC is committed to deepening knowledge of Ehlers-Danlos Syndromes, Marfan Syndrom and Loeys-Dietz Syndrome, and related conditions. Learn more below.
Advocates Living with EDS to Follow
Here are just a few of the advocates raising awareness about EDS, chronic illness and disability.
Please note, we are sharing these accounts as a resource to learn more about advocates living with various subtypes of EDS, including VEDS, cEDS, BCS, and hEDS. References or links to external resources, including digital creators, are provided for informational purposes only and do not constitute endorsement or recommendation.
Dani Medina
@the.dani.adventure she/her; VEDS • short life expectancy, big expectations🦋 • disabled model @zebedeetalent • AZ Accessibility 🌵♿️ • advocate • Yaqui • 🇵🇷 • motherhood & marriage
Dr. Cortney Gensemer, PhD
Science | Chronic Illness | Motherhood
Breaking down research on EDS, POTS, MCAS, ME/CFS & more
Abbey Phillipson
Izzy Kornblau, MS, CGC
Karina Sturm
#Journalist creating content in 🇩🇪 & 🇺🇸 about #EhlersDanlosSyndrome, #ChronicIllness and #Disability
Grace Nuhfer
@gracenuhfer she/her; usa paralympian
@zipswsd alum | northwestern
@opticaldelusionpod @voiceinsport mentor!
CTC Funded Research Highlight
Norris Labs/Medical University of South Carolina (MUSC) Mast Cell Activation & hEDS Research
The CTC is proud to fund the Norris Lab's groundbreaking connective tissue biology research to deepen scientific understanding of the connection between Mast Cell Activation Syndrome (MCAS) and hEDS.
"We are working to understand the intricate connection between connective tissue dysfunction and mast cell activation. Our aim is to enhance the management of both MCAS and EDS, offering a more comprehensive approach to improving the lives of affected by these conditions." -- The Norris Lab
Center for the Developing Brain & Spine at Brown Neurosurgery Tethered Cord Syndrome (TCS) Research Program
The CTC is proud to fund critical research to better understand tethered cord syndrome (TCS) and occult tethered cord syndrome (OTCS). TCS research program is focused on advancing diagnostics and surgical treatments for people with tethered cord syndrome. The program also aims to develop a better understanding of this complex condition and its association with connective tissue disorders.
Currently, areas of focus within the Research Program include:
-
Establishing standardized tools for establishing the clinical diagnosis of TCS
-
Monitoring and describing the outcomes of TCS surgery across a large and diverse patient population, as well as defining optimal surgical techniques for improving symptoms and minimizing the risk of complications.
-
Understanding the lived experience of patients with TCS, including identifying the most important patient-reported outcome measures (PROMs) for this disease, and improving how clinicians ask patients about eir symptoms.
-
Understanding the underlying pathophysiology of TCS, including how the abnormal filum leads to symptoms of back pain, neurological findings in the legs, and urinary dysfunction through chronic stress and inflammation of the lower spinal cord.
-
Understanding how connective tissue disorder comorbidities, such as EDS, can contribute to TCS pathology, and better identifying EDS-TCS as an under-recognized phenotype of this disorder.
Our Services
1
Service Name
Describe your service here. What makes it great? Use short catchy text to tell people what you offer, and the benefits they will receive. A great description gets readers in the mood, and makes them more likely to go ahead and book.
2
Service Name
Describe your service here. What makes it great? Use short catchy text to tell people what you offer, and the benefits they will receive. A great description gets readers in the mood, and makes them more likely to go ahead and book.
3
Service Name
Describe your service here. What makes it great? Use short catchy text to tell people what you offer, and the benefits they will receive. A great description gets readers in the mood, and makes them more likely to go ahead and book.
Thank you for your interest in volunteering with the CTC! Our current volunteer opportunities are remote and all meetings will be over Zoom. We are looking for volunteers to help in the following areas:
-
Social Media
-
Blog posts
-
Graphic Design
-
Resource Development
-
Source materials on connective tissue disorders
-
-
Fundraising
Please fill out our volunteer application form here. We look forward to hearing from you and will get back to soon you with next steps.
Invest in Breakthroughs: Fueling Vetted Research for a Cure
Your support for the CTC Research Grant Program empowers scientists dedicated to accelerating scientific discovery in the most needed areas:
-
Improved Diagnostic Tools: Reducing the diagnostic odyssey and ensuring patients receive proper care sooner.
-
Development of New and Effective Treatments: Moving beyond symptom management toward true therapeutics for painful and debilitating comorbidities.
-
Identification of Underlying Causes:Finding the root causes of CTDs to unlock the path toward a cure.
Fight Misinformation & Raise Awareness About CTDs
Connective Tissue Disorders are still widely misunderstood and unrecognized. The CTC Awareness Initiatives Program provides seed funding for vetted projects that advance understanding and promote outreach for Ehlers-Danlos, Marfan, and Loeys-Dietz Syndromes.
Every contribution directly funds essential research and initiatives to improve patient outcomes.
Your Contributions In Action
Key Findings
22
Describe the item and include any relevant details. Click to edit the text.
24
Describe the item and include any relevant details. Click to edit the text.
15
Describe the item and include any relevant details. Click to edit the text.
7
Describe the item and include any relevant details. Click to edit the text.
CTC Funded Research Highlight
Norris Labs/Medical University of South Carolina (MUSC).
This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.
Center for the Developing Brain & Spine at Brown Neurosurgery
Tethered Cord Syndrome (TCS) Research Program
The TCS research program is focused on advancing diagnostics and surgical treatments for people with tethered cord syndrome. The program also aims to develop a better understanding of this complex condition and its association with connective tissue disorders.
Jeevan Mann
This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.
Help Lines
CTC Email Support
Marfan Foundation:
Help Center
EDS Society Helpline
Daily Living with a CTD
Compiled at the request of the SSA. It is “groundbreaking” and an invaluable resource for you!
Jon Rodis & Kathleen Kane, Esq. presentation slides from the 2017 New York Institute of Technology College of Osteopathic Medicine Symposium
“How to have a great disabled life.” A treasure trove of guides for financial survival, health care, housing… you name it, it’s here, in a beautiful, inspiring presentation!
A program to help people with disabilities become entrepreneurs
Tax-advantaged savings accounts that can fund disability expenses.
Help finding financial assistance, food pantries, medical care, and other free or reduced-cost assistance
Advocates Living with EDS to Follow
Here are just a few of the advocates raising awareness about EDS, chronic illness and disability.
Please note, we are sharing these accounts as a resource to learn more about advocates living with various subtypes of EDS, including VEDS, cEDS, BCS, and hEDS. References or links to external resources, including digital creators, are provided for informational purposes only and do not constitute endorsement or recommendation.
Dani Medina
@the.dani.adventure she/her; VEDS • short life expectancy, big expectations🦋 • disabled model @zebedeetalent • AZ Accessibility 🌵♿️ • advocate • Yaqui • 🇵🇷 • motherhood & marriage
Dr. Cortney Gensemer, PhD
Science | Chronic Illness | Motherhood
Breaking down research on EDS, POTS, MCAS, ME/CFS & more
Abbey Phillipson
Izzy Kornblau, MS, CGC
Karina Sturm
#Journalist creating content in 🇩🇪 & 🇺🇸 about #EhlersDanlosSyndrome, #ChronicIllness and #Disability
Grace Nuhfer
@gracenuhfer she/her; usa paralympian
@zipswsd alum | northwestern
@opticaldelusionpod @voiceinsport mentor!
Small Title
This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.
Small Title
This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.
Small Title
This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.