FSHD Lab Day | July 8, 2023

Saturday, July 8, 2023, 10:00 AM - 2:00 PM,  Nationwide Children's Hospital Education Center

Non-Accredited (4.00 hours), Non-Physician Attendance (4.00 hours)

Summary of Biomarker Clinical Study:
Facioscapulohumeral dystrophy (FSHD) is a rare genetic muscle disease that affects approximately 1 in 8,000 individuals worldwide. FSHD causes progressive muscle weakness and wasting, particularly in the face, shoulders, and upper arms. Currently, there are no effective treatments for FSHD, and diagnostic methods are limited to clinical examination and genetic testing. This creates a significant burden for FSHD patients and their families, who often experience delays in diagnosis and a lack of treatment options.

The Saad lab is conducting a clinical study to identify molecular blood biomarkers for FSHD using a novel approach that focuses on analyzing the content of exosomes, which are tiny particles found in the blood that contain proteins and genetic material. By decoding the exosome content, Dr. Saad's team hopes to identify non-invasive blood biomarkers that can be used to diagnose and predict FSHD onset, severity, and progression, as well as to assess the efficacy of FSHD therapeutics in future clinical trials.

Your blood donation will play a crucial role in supporting this research and accelerating the validation of therapies in clinical trials. Identifying blood biomarkers for FSHD could significantly improve the diagnosis and management of the disease. Furthermore, this research could pave the way for the development of new treatments and improve the quality of life for individuals affected by FSHD.

Agenda
9:30 .am.         Check in Opens

10 a.m.             Welcome: What This Day Is For
                        Sue Aumiller ,  Columbus Chapter Director, FSHD Society and Brittany Connor
10:10 a.m.        The Bigger Picture: The Road to Treatments for FSHD and Why Blood Biomarkers are Important
                         Kevin Flanigan, MD, Scott Harper, PhD
10:35 a.m.       The Biomarker Study and Why We Need Blood Samples
               Nizar Saad,  PhD
10:50 a.m.       Q and A
11 a.m.             Red Scooter Diaries Film and Discussion
12:35  p.m.      Lunch
2 p.m.              Adjourn

Note: blood draws will be done throughout the day 10 a.m.-2 p.m. If you choose to give blood, you will get a call to set your time and get your consent form. 

Who Should Attend
People with genetically proven FSHD and unaffected spouses and friends. Both people with genetically proven FSHD and their unaffected spouses and friends with no family history of FSHD can give blood

Date and Time
July 8, 2023 | 10 a.m.- 2 p.m.

Location
Nationwide Children’s Hospital Education Center
575 South 18th Street, Columbus, OH  43205

Cost
 No charge, this program is free.

Program includes:
Education, light breakfast, box lunch and free parking. Research blood draw participation  for those 18 and older.


Parking
Is located in the Orange Garage near the Education Center at 543 South 18th St.
We will give you a parking sticker  to validate your parking when you check in at the program.

Confirmation
A confirmation email will be sent when you sign up and another one week before the program, with driving directions. You will also be contacted to get your blood draw consent and set a blood draw  time.

Can’t attend?
If you can’t attend but want to participate in the blood draw, contact Brittany at (614) 355-2727.

Program Questions?  Call (614) 355-0662

Registration Cost: 
No charge, this program is free.

Unable to Attend?
Should something come up and you are unable to attend, please contact Community Education by calling us at (614) 355-0662 or emailing [email protected] 

 

Nationwide Children’s Hospital is committed to ensuring that its programs, services, goods, and facilities are accessible to individual with disabilities as specified under Section 504 of the Rehabilitation Act of 1973 and the American with Disabilities Amendment Act of 2008.  If you have needs that require special accommodations, please contact Community Education at 614-355-0662.

The Nationwide Children's Hospital® adheres to ACCME Criteria, Standards and Policies regarding industry support of continuing medical education. Disclosure of faculty and their commercial relationships will be made prior to the activity.

Mitigation of Relevant Financial Relationships

Nationwide Children's Hospital adheres to the ACCME’s Standards for Integrity and Independence in Accredited Continuing Education. Any individuals in a position to control the content of a CE activity, including faculty, planners, reviewers or others are required to disclose all relevant financial relationships with ineligible entities (commercial interests). All relevant conflicts of interest have been mitigated prior to the commencement of the activity.