What You Need to Know About July’s National Scleroderma Conference

Dinah Chong Watkins avatar

by Dinah Chong Watkins |

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The first National Scleroderma Conference I went to was in Anaheim, California, in 2014. Not only was it one of the best organized major conferences I had ever attended — the number of workshops and amount of information was dazzling — but also it was great to meet so many other people with scleroderma, along with caregivers and medical specialists. And organizers made it fun!

I recently spoke with Kerri Connolly, now in her 14th year as both the national director of programs and services at the Scleroderma Foundation and the director of the National Scleroderma Conference.

Kerri works with the medical community to build their patient education programs. She joined the organization after her mom was diagnosed with scleroderma. It has been Kerri’s goal ever since to build strong programming for those on this journey.

Excerpts of our discussion follow.

Kerri Connolly. (Courtesy of Kerri Connolly)

DCW: The Scleroderma Foundation’s National Conference, an entirely virtual event, will be held July 17-18. Please give us some background on the conference.

KC: The annual National Scleroderma Conference offers educational and networking opportunities for people living with scleroderma, their caregivers, family members, and friends.

Workshops, panel discussions, and other educational sessions are led by leading scleroderma researchers and healthcare professionals. Whether you are newly diagnosed or have had scleroderma for many years, the National Conference is a great way to learn about the disease and become connected with others that are dealing with scleroderma.

With 30 workshops, plus exhibitors and the chance to meet other individuals affected by scleroderma and caregivers, the weekend’s activities offer an excellent opportunity for attendees.

“Connect and Thrive Together” is our theme this year. This reflects one of the most important aspects of the conference. When people affected by scleroderma connect, they create a powerful energy that helps them thrive throughout the year. In addition to access to scleroderma experts, the conference is a vital opportunity to meet others who have scleroderma. Connecting with others is highly beneficial for those whose scleroderma is recently diagnosed, but also for individuals who are isolated from the larger scleroderma community because of geography or other reasons.

This conference (now in its 22nd year!) provides an opportunity for people living with scleroderma, families, caregivers, and volunteers to participate in lectures and workshop sessions presented by leading physicians, researchers, allied healthcare providers, educators, and other experts. It also provides our community with opportunities to learn the latest in the state of scleroderma research from internationally renowned clinicians and scientists, as well as pharmaceutical/biotech companies conducting scleroderma-related research.

Registration for individuals with scleroderma is $30. Scholarships are also available.

One of the highlights of the past conferences was the opportunities for attendees to meet and exchange ideas and recommendations. How will the virtual format of this year’s conference incorporate that?

About 98% of the virtual conference will still have the opportunity for “live interaction.” Attendees will still be able to interact through several events happening across the weekend. We have created a “virtual lounge” on Saturday evening to stimulate open conversations.

Although we will miss our time together in-person, through this virtual conference, we will continue the Scleroderma Foundation’s history of building a rich educational program. Nearly every aspect of this complicated disease will be addressed to help patients and caregivers understand and develop best practices for disease management to live the best life possible with the challenges this disease presents. We are creating a series of workshops and plenary sessions, panel discussions, live Q&A opportunities, research poster hall sessions, special interest social gatherings, and of course, a virtual exhibit hall.

From left, Diane Weber, TaMetress Reed, and Christina Locke attend the 2019 National Scleroderma Conference in Chicago. (Courtesy of Dianne Weber, TaMetress Reed, Christina Locke)

What are some of the programs and breakout sessions you’re excited to see featured this year?

An amazing program is scheduled. All sessions are geared toward adult patients. The categories include: Newly Diagnosed, Lung Involvement, GI Issues and Nutrition, Wound Care and Digital Ulcers, Medications and Medication Assistance Programs, Lab Tests, Overlapping Conditions, COVID-19 Updates, Cooking Class and Easily Prepared Meals, Lung Transplantation, Dental Issues, Exercise, Yoga, Caregivers and Care Partners, Physiological Effects, and more.

On the research side, what topics and specialists can we expect?

Our conference faculty consists of the leading experts in scleroderma. All medically led sessions will offer the most up-to-date research on recognition and detection, treatment options, and testing, evaluation, and monitoring. … Attendees will be able to learn and ask questions to the scientists working on scleroderma-specific research.

What about programs for children and adolescents?

We are planning a separate event solely for them, called the Kids Get Scleroderma Conference, scheduled for October (date is TBA).

Find more information and register for the conference here. Space is still available for virtual exhibitors, too.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Theresa Hill avatar

Theresa Hill

My has it and it hurt me so bad to see her going through this can someone please help me

Reply
Maricarmen Bandin avatar

Maricarmen Bandin

I have been managing scleroderma since 2010 thru a plant based diet, cycling, and fasting. I am interested somehow in attending and being a part of one of the work shops. How can I do this? Thank you.

Reply
Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi! More information and registration for the Conference can be found here https://www.scleroderma.org/site/SPageServer?pagename=national_conference_home&AddInterest=1301

Reply
Linda Cassell avatar

Linda Cassell

I struggle with decreased flexibility in my hands and hand contractures which affect my day to day life in general.
Does anyone out there have the same issues and if so, is there anything you do that helps? Thank you.

Reply
Dinah Chong Watkins avatar

Dinah Chong Watkins

Hi Linda! Go to this link for exercises and management for your hand contractures. Take it one day at a time! https://youtu.be/YwWP7mgcYhU

Reply
JoAnn Heffernan avatar

JoAnn Heffernan

How do I register to attend the conference virtually?

Reply
Dinah Chong Watkins avatar

Dinah Chong Watkins

To register for scleroderma conference
https://www.scleroderma.org/site/SPageServer?pagename=national_conference_home&AddInterest=1301

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