FSIG Expert Fabry Conference

The Fabry Support & Information Group proudly announces the dates for the 2021 Virtual FSIG Expert Fabry Conference on April 9-11, 2021.

This year FSIG celebrates 25 years of service to our Fabry community and our 8th annual expert Fabry conference. Due to the continuing pandemic, this conference will be our second virtual meeting.  We have some great new items added just for the Fabry patient community. You will receive valuable, up-to-date information about Fabry’s disease, have the opportunity to network with others, hear informational presentations and real patient stories, engage in new breakout sessions, and be apart of our special awards presentation. You don’t want to miss this Conference!

Register Here

or email us at support@fabry.org

Friday, April 9, 2021

5:00 PM -
5:30 PM
Welcome
5:30 PM -
6:15 PM
Fabry 101
6:15 PM -
6:45 PM
Darrick Campbell, Fabry Patient Speaker
6:45 PM -
7:00 PM
Break
Please visit our sponsors in the Exhibit Hall
7:00 PM -
8:00 PM
Social Activity, Fun & Prizes

Saturday, April 10, 2021

9:00 AM -
2:45 PM
Virtual Exhibit Hall
Visit with our Sponsors and Exhibitors in the Virtual Exhibit Hall
10:00 AM -
10:07 AM
Welcome & Jack Johnson
10:07 AM -
10:22 AM
Diamond Sponsor Presentation
10:22 AM -
10:37 AM
Diamond Sponsor Presentation
10:37 AM -
10:42 AM
Gold Sponsor Presentation
10:42 AM -
11:45 AM
Dr. Eric Wallace
"Update in Fabry Nephrology"
11:45 AM -
12:15 AM
Virtual Exhibit Hall
12:15 PM -
1:00 PM
Lunch Break
1:00 PM -
1:15 PM
Industry Update
1:15 PM -
1:30 PM
Industry Update
1:30 PM -
1:45 PM
Industry Update
1:45 PM -
2:45 PM
Dr. Rob Hopkin
"What's New in Fabry"
2:45 PM -
3:00 PM
Fun, Motivation & Prizes

Sunday, April 11, 2021

9:00 AM -
1:00 PM
Virtual Exhibit Hall
Visit with our Sponsors and Exhibitors in the Virtual Exhibit Hall
10:00 AM -
10:05 AM
Welcome
10:05 AM -
10:20 AM
Industry Update
10:20 AM -
10:35 AM
Industry Update
10:40 AM -
11:10 AM
Breakout Session One
A: "Fabry Pain Management" - Dr. Rob Hopkin
B: Fabulous Fabry Females - Dawn Laney
C: "Food, Forks & Fabry" - Kim Page
D: "Who, What, Why & Maybes of Clinical Trials" - Myrl Holida
11:10 AM -
11:25 AM
Industry Update
11:25 AM -
11:35 AM
Industry Update
11:35 PM -
11:45 PM
Industry Update
11:50 AM -
12:20 AM
Breakout Session Two
A: "How to Stay Inspired When You are so Darn Tired" - Christine Cashen
B: Fabulous Fabry Females - Dawn Laney
C: "Move Your Body for Better Health" - Wendie Pett
D: "Who, What, Why & Maybes of Clinical Trials" - Myrl Holida
12:20 PM -
12:40 PM
Lunch Break
12:40 PM -
1:10 PM
Sarah & Stephanie Nelson, Fabry Patient Speakers
"Surviving to Thriving with a Rare Disease"
1:10 PM -
1:30 PM
Patient Stories
1:30 PM -
2:00 PM
Awards, Inspiration, Prizes & Closing Remarks
Jack Johnson

Rob Hopkin, MD

Associate Professor of clinical pediatrics, UC Department of Pediatrics, Cincinnati Children’s Hospital, Cincinnati, OH

Eric Wallace, MD, FASN

University of Alabama Birmingham, Associate Professor of Medicine, Department of Medicine, Division of Nephrology, UAB Director of Telemedicine, Co-Director of Home Dialysis

Dawn Laney, MS, CGC, CCRC

Instructor, Program Leader, Genetic Counselor/Research Coordinator, Emory University School of Medicine, Decatur, GA

Kat Perkins

Singer and Speaker Kat Perkins was a Finalist for NBC’s The VOICE. She performs at sold out concerts, overseas military tours for troops, and has spoken for hundreds of organizations across America about following their dreams, living a Fearless life, and making a positive impact on the world. She also founded a nonprofit, The Rising Star Foundation, which provides scholarships and opportunities for aspiring musicians. Her program for FSIG will be inspiring and memorable.

Mark Mayfield

Mark Mayfield is not just an entertaining speaker, he’s also one of America’s finest Master of Ceremonies. It’s pretty simple what Mark Mayfield does: he talks about very serious stuff in a very funny way. Mark has one of the most diversified backgrounds in the speaking industry. A national convention planner recently called Mark “one of the very few, really funny, inspiring men in America today”.

Sarah & Stephanie Nelson

Sarah and Stephanie are sisters and young adults living with Fabry disease. They bring a perspective of growing up with a rare disease, navigating the healthcare system, and finding purpose to use what they have learned and give back to the rare disease community. Sarah and Stephanie hope that their story can help educate and inspire those who hear it.

Wendie Pett

For over two decades, Wendie Pett has been motivating people to make fitness and good nutrition part of their daily routine. She teaches the balance of mind, body and spirit through her Visibly Fit™ wellness program. Wendie has a nationally syndicated television program that airs each week on the NRB Network, Upliftv, WLCN, and IBN Television. Her television show also appears weekly on the Life Network For Women app. She’s known as ‘Coach Wendie’ on KTIS radio in the Twin Cities with her featured healthy tips segments and is a featured columnist in VEGWORLD Magazine, The Christian View, Best Ever You, Refreshed, Vegan Lifestyle, and Diet.com. To learn more go to http://www.wendiepett.com

Kim Page, MS, RD, LDN

Kimberley Page, MS, RD, LDN is a Registered Dietitian II with a Masters Degree in Clinical Nutrition from Indiana State University. Kim has been a registered dietitian at in the Division of Nutrition Therapy at Cincinnati Children’s Hospital for 11 years.

Kim’s specialty area of practice is Inborn Errors of Metabolism with the Division of Human Genetics. As an expert in the field of genetic metabolic disorders, she works with a team of Clinical Geneticist. She works with both pediatrics and adults with Inborn Errors of Metabolics and rare genetic disorders in the out-patient and in-patient setting.

Kim has been a speaker at conferences, lectures, training programs, and seminars across the US. She has spoken on countless topics about the nutrition management of Inborn Errors of Metabolism and Rare Genetic Disorders.

Kim is a member of the Academy of Nutrition and Dietetics and the Ohio Dietetic Association. Kim has served on the Board of Directors for the Genetic Metabolic Dietitians International and a member for over 10 years.

Myrl Holida, PA

Myrl Holida is a Physician Assistant in the Division of Medical Genetics and Genomics at the University of Iowa Stead Family Children’s Hospital. He started at the University of Iowa Hospitals and Clinics (UIHC) in 1981 as a Cardiovascular Research Assistant and then attended the Military Physician Assistant School and returned in January 1988 in Pediatric Bone Marrow Transplant. He has been a site Principal Investigator/Co-Investigator on multiple clinical trials and was involved in the first Fabrazyme trial in the late 1990s. He transitioned to his current role in Medical Genetics in 2014 and is assisting in expanding the Iowa Lysosomal Disorder Center.

Darrick Campbell

Diagnosed with Fabry in 2013, Darrick is an Author, Speaker and Businessman from the Greater Chicagoland area.

Christine Cashen, CSP, CPAE

People across the globe are raving about Christine Cashen and her refreshing take on everyday life. Christine is one of the few individuals to meet the rigorous induction criteria of the National Speakers Association, CPAE Speaker Hall of Fame, and there’s no question that she deserves that honor; her effortless ability to pull in any audience with her remarkable insights on commonplace situations make her and her messages unforgettable. And, yes, she is also a Certified Virtual

Author of the award-winning books, THE GOOD STUFF: Quips & Tips on Life, Love, Work and Happiness and It’s YOUR Business: Good Stuff for Your Personal, Professional, and Funny Business. Christine holds a bachelor’s degree in Communication and a master’s degree in Adult Education. In 2016, she was the recipient of an honorary doctorate from Central Michigan University.

Before embarking on her journey as a speaker, she worked as a university admissions officer, corporate trainer, and broadcaster. She is a mother of two, wife of a “hottie engineer,” and an average golfer.

Diamond Sponsor

Gold Sponsor

Silver Sponsor

Bronze Sponsor

Partner Sponsor

Awards

FSIG will be bringing back two special awards this year: Exceptional Caregiver and Outstanding Medical Professional Award! If you or a loved one has received Exceptional Care from your Caregiver (mom, dad, grandmother, etc), now is your chance to show your gratitude.

Caregiver Nominations  (Please print the form and mail, email or fax the completed form to FSIG.)

Do you know a nurse who defines the meaning of caring? Is there a healthcare professional who has gone above and beyond to help support you or your family? If someone comes to mind when you hear these questions, then take a minute to nominate that individual for the Medical Professional Award!

Medical Professional Nominations  (Please print the form and mail, email or fax the completed form to FSIG.)

All nominations will be presented at the 2021 FSIG Expert Fabry Conference in April. One caregiver and one medical professional will receive a plaque and a gift card.

Nominations will be accepted now through April 1, 2021. Complete these forms today and spread the news!

Mail: FSIG, PO Box 510, Concordia, MO 64020
Email: info@fabry.org
Fax: 660-463-1356