EDS Patient-Scientist Initiative

Developing the Next Generation of EDS Experts

When it comes to complex diseases, patients often are the true experts. The lived patient experience leads to important clinical and biological questions. When that is paired with the scientific tools to answer them, patients can make an impact on the entire community.

Our goal is to build a community of physicians, scientists and health care professionals who understand this disease – and who better than patients themselves? By doing so, we can change the perception of EDS and HSD, foster new research discoveries and advance clinical care. Our educational foundation aims to make an impact for generations of patients in the future, while also providing an inclusive environment for students with disabilities an equal opportunity to thrive.

These opportunities not only grow the number of people in research and healthcare dedicated to EDS, but also offer a valuable opportunity to academically talented and motivated students who confirm a strong interest in graduate and/or doctoral studies, especially those focused on EDS research.

Our Current Programs

HIP

The Gensemer hEDS Intern Program (HIP)

In 2018, Cortney Gensemer was a first-year PhD student in the Norris Lab interested in studying hEDS because of the impact it had on her life as a patient. She helped to transform the lab into one of the world's largest groups studying hEDS. When it comes to complex diseases, patients often are the true experts. The lived patient experience leads to important clinical and biological questions. When that is paired with the scientific tools to answer them, patients can make an impact on the entire community.

MEET OUR HIP 2024 INTERNS

Lucas Glock

Rutgers University

Lucas is a junior at Rutgers University, majoring in neurobiology and minoring in disability studies. His focus is the genetic and molecular mechanisms of hEDS and common co-morbidities, particularly POTS. Aspiring to an MD/PhD program, he is committed to bridging the gap between research and direct care for patients with EDS. His goal is to integrate research findings into clinical practice to improve treatment outcomes for EDS and its co-morbidities. Lucas is active in advocacy and awareness efforts for the disabled, LGBTQ+, and rare disease communities

Sydney Severance

College of Charleston

Sydney is a freshman at the College of Charleston. She plans to major in biology on a pre-med track and will be transferring to Vanderbilt University in the fall. She is fascinated by genetics and loves to learn about the role of biology in hEDS and its co-morbid conditions. Sydney is specifically interested in exploring the GI manifestations often seen in hEDS and one day hopes to attend medical school. Connecting to a broader purpose, spreading awareness, patient advocacy, and helping future generations with EDS, gives Sydney hope.

Sofie Strompf

George Mason University

Sofie is a rising junior at George Mason University in Northern Virginia. She is working towards a B.S. in biology with a concentration in biotechnology and molecular biology. In addition to coursework at GMU, she works on research in a proteomics lab and is the Undersecretary for Accessibility for Student Government. In the future, she plans to pursue an MD-PhD focused in anesthesiology and applications of proteomics in genomics. She is particularly interested in the molecular and cellular intersections between metabolism of anesthesia, activity of dopamine, and presence of EDS.

Sofia Willey

Clemson University

Sofia is a junior genetics major at the Honors College of Clemson University, with aspirations to pursue a career in medicine, specifically within pediatrics. She is particularly fascinated by mast cell activation and plans to study its role in hEDS and its comorbidities this summer. Combining her research background with personal experiences, Sofia aims to contribute valuable insights to the medical field. Her ultimate goal is to merge her research expertise with clinical practice, enhancing patient care and advancing treatment options for pediatric patients.

Cara Virgin

Temple University

Cara is a junior at Temple University studying Genomic Medicine, originally from Parkland, FL. She aspires to pursue a PhD, with a particular interest in rare genetic diseases, including EDS and its associated comorbidities. Cara is also a dedicated advocate for disabilities and service animals, actively educating the public about invisible disabilities and the diverse benefits of service dogs. Her passion for raising awareness and fostering understanding extends to various community outreach efforts, where she emphasizes the importance of support and accessibility for individuals with disabilities.

What is HIP?

HIP stands for Hypermobile Ehlers-Danlos Intern Program which is an 8-week summer internship with the Norris Lab at the Medical University of South Carolina. The purpose of the HIP program is to increase the critical mass of researchers studying hEDS and empower patients with hEDS/HSD to be a part of the change. By doing so, we envision the acceleration of new discoveries that will better help researchers and clinicians understand the causes of hEDS to guide therapeutic discoveries.
When and where is HIP 2024?

HIP 2024 will be held by the Norris lab June 3 - July 26, 2024 in Charleston, SC, on the campus of the Medical University of South Carolina.
Who should apply for HIP?

HIP is meant for students (either college or graduate) who have EDS OR HSD or a personal connection to either disease. We are looking for academically talented and motivated students who confirm a strong interest in post-baccalaureate studies with a goal of contributing to hEDS/HSD healthcare, education, advocacy or research in the future.
What happens during HIP?

Interns will work on individual research projects in a basic science lab environment using genetic and molecular techniques. Over the course of the 8 weeks, you will develop or hone specific skills that are required for success in subsequent post-graduate specialties including MD, PhD, MD/PhD, nursing, OT/PT, biotech, or other areas of healthcare and outreach. Our primary goal is to provide you with a research experience in an area of the biomedical sciences that will not only give you a broad view into the world of a researcher but also enhance your scientific perspective and provide you with important “hands-on” experience beyond what you receive through your current training. In addition to working with Dr. Norris, our trainees are supported by a research team. This team consists of graduate students, postdocs, medical students, research scientists, and other undergraduate or high school students working in the Norris lab.
Will I only be doing research during HIP?

In addition to your research project, you will have access to: Journal Club meetings and seminars One-on-one mentorship – Each HIP student is paired with a mentor who will guide them in the lab and provide first-hand information about MUSC’s Graduate and Clinical Programs Clinical and Surgical Shadowing Experiences Lectures and seminars by EDS experts HIP Symposium – a one-day conference during which student trainees present their final projects to their peers, mentors, and research team HIP participants are also encouraged to build both social and academic networks with one another and with members of the university community. Participants are encouraged to organize and coordinate activities with their peers during off-hours, and the Norris lab will offer planned activities and events for all HIP participants. Students will also have the opportunity to network with previous HIP alumni.
Is HIP a paid internship?

Yes! HIP participants will receive a living allowance of $4,000 for the entire 8-week program to help pay for expenses while participating. (Please note: this living allowance may not be tax-free, and taxes will be deducted if required.) Housing in downtown Charleston will be covered for those accepted into the program that reside outside of the greater Charleston Area. Each student has their own bedroom and the common areas are shared by their suitemates. Accepted students will engage with the Norris lab or Dept of Regenerative Medicine administrative staff to set up other housing as needed. Eligible travel expenses will be covered as well.
What are the eligibility requirements for HIP?

Applicants must: Be able to complete the entire 8 weeks of the program. (June 3, 2024 – July 26, 2024) Have a personal experience with or connection to the Ehlers Danlos Syndromes or Hypermobility Spectrum Disorders Both live in the U.S. and be a U.S. citizen Be committed to a career studying, treating, educating, or advocating for hEDS or HSD Preferred: Have prior research experience GPA of 3.0 or higher
What will I need for the application?

An unofficial college transcript  Resume/CV Responses to the following essay prompts (limit of 100-words each): Provide an overview of your career aspirations and how this internship aligns with your professional goals. What areas of research related to hEDS and biomedical science interest you? If you have prior research experience, please elaborate on it and include specific techniques you've learned. If you have not had formal research experience in a lab, but have taken labs in your college coursework, you can discuss this. What are you hoping to achieve through the HIP program? What does it mean to you to be a patient-scientist? Are there any other interests or things you would like to share with us? (i.e., advocacy, artistic endeavors, athletics, etc.) Two academic letters of recommendation. These letters can be from: Faculty who are familiar with your science coursework or research skills and/or A scientist/clinician at another institution who has mentored you in a research experience.  Note: The letters are required to be written on letterhead and signed by the faculty recommender.  A link will automatically be sent to the recommender’s email address which you provided on your application.
Can I start the application and come back later?

Yes! You can save your progress and return at any time before the application deadline.
When are the 2024 HIP applications due?

Applications for HIP 2024 will open November 1, 2023, and are due at 11:59 pm on January 15, 2024.
What if I have more questions about HIP?

If you have any questions regarding the hEDS intern program or the application, please contact Molly Griggs at thenorrislab@musc.edu.

ABOUT THE HIP PROGRAM

"Never have I met a group of such resillient, smart and dedicated individuals. I have learned so much and I feel incredibly grateful to have the unique opportunity to work on my own disease." -- Maggie Osterhaus, HIP 2023

Visiting Scholars Program

vsp

The Norris lab is thrilled to announce an additional program to allow academically talented students to join us in the lab!

One thing that has become apparent from our intern program is that, unfortunately, we must turn away the majority of applicants. Due to our current staffing, our bandwidth is limited to 5-6 interns during the summer. We believe that each of the applicants deserves a chance to work with us and have been working to find a pathway for that to happen.

The Norris lab Visiting Scholars Program provides short-term shadowing opportunities in our lab for individuals who have the intention of continuing their education, working in the space of EDS healthcare, advocacy or research and have a strong personal connection to the disease. During their three days in the lab, participants will get to hear about our research, shadow our scientists in their work, and learn from experts in the field.

We review applications for the Visiting Scholars Program on a rolling basis and accept participants as space allows. Thanks to generous donors, we are able to cover housing and travel to eligible applicants. Unfortunately, we can only offer this program to students in the United States.

Apply to be a Visiting Scholar