Domingo 16 de Diciembre 2018

CureDuchenne Cares Improves Standard of Care and Clinical Trial Education Throughout the U.S. for Families Affected by Duchenne

2017 CureDuchenne Cares Schedule Announced

NEWPORT BEACH, Calif.–(BUSINESS WIRE)–#CureDuchenne–It is vital that those caring for children and young adults with
Duchenne muscular dystrophy have a thorough understanding of the disease
and deliver appropriate care, based on the current research evidence.
Inadequate understanding of the disease can be harmful to patients
already at risk for severe muscle degeneration. CureDuchenne,
a nonprofit that funds research to find a cure for Duchenne, pioneered
the community based CureDuchenne Cares program to address this unmet
need. CureDuchenne
Cares
provides an interactive education and outreach program for
parents, caregivers, physical therapists and other medical professionals
of patients with Duchenne. With support from biotech and pharmaceutical
companies, CureDuchenne Cares travels to local communities to bring
critical resources that can positively impact patients’ lives and their
ability to respond to treatments as they become available.

CureDuchenne also provides advanced training to physical therapists
through its CureDuchenne
Cares Certified Physical Therapist
Program to help physical
therapists and other health care professionals deliver superior care to
meet the specialized needs of Duchenne patients. This certification
program ensures that trained professionals will be available to treat
Duchenne patients across the country.

Dr.
Eric Olson
from the Olson Laboratory at the University of Texas
Southwestern Medical Center Department of Molecular Biology will be a
guest speaker at the first CureDuchenne Cares family session of the year
on January 28 in Dallas. Dr. Olson will speak about his gene editing and
CRISPR research. The free family
and caregiver workshop
also includes practical information on
physical therapy, a medical equipment demonstration, research updates
from pharmaceutical representatives and current clinical trials. The physical
therapist continuing education session
is on January 27.

“We created CureDuchenne Cares to answer the call of parents who need
advice and best practices for managing the various facets of Duchenne in
a manner that will improve their child’s quality of life and encourage
the child’s amenability to pharmaceutical treatments as they become
available,” said Debra Miller, founder and CEO of CureDuchenne. “We want
all those impacted with Duchenne to stay as healthy as possible for as
long as possible and be empowered with the latest information on the
standard of care and available clinical trials for Duchenne.”

CureDuchenne Cares increases the health and wellbeing of patients living
with Duchenne through educating parents, caregivers, clinicians and
physical therapists on best practices for Duchenne management,
stretching, equipment, orthopedics and adapting all of these factors to
the different stages of the disease. This program informs families on
the latest scientific developments in Duchenne research, including
status and participation in clinical trials.

The 2017 program features Family
and Caregiver Workshops
, Professional
Continuing Education Course
for physical therapists and other
healthcare professionals, and Family
Summits
.

  • January 27 – Dallas, TX Professional
    Continuing Education Course
  • January 28 – Dallas, TX Family
    & Caregiver Workshop
    (Free)
  • February 24 – Phoenix, AZ Professional
    Continuing Education Course
  • February 25 – Phoenix, AZ Family
    & Caregiver Workshop
    (Free)
  • March 25 – Atlanta, GA Family Summit (Free)
  • April 8 – San Diego, CA Family & Caregiver Workshop (Free)
  • April – Milwaukee, WI Professional Continuing Education
    Course/Family & Caregiver Workshop
  • May – Anaheim, CA Family Summit (Free)
  • May – Los Angeles, CA Professional Continuing Education Course
  • June – Austin, TX Family Summit (Free)
  • September – Birmingham, AL Professional Continuing Education
    Course/Family & Caregiver Workshop
  • September – Philadelphia, PA Professional Continuing
    Education Course/Family & Caregiver Workshop
  • October – Indianapolis, IN Professional Continuing Education
    Course/Family & Caregiver Workshop
  • October – Toronto, Canada Family & Caregiver Workshop (Free)
  • November – Northern CA Family Summit (Free)

“Physical therapy continues to be one of the primary treatment options
for those with Duchenne,” said Celeste Graham, PT, Director of Physical
Therapy, CureDuchenne. “A daily physical therapist-guided program is
critical for those with Duchenne to help maintain function and quality
of life. Training parents and caregivers as well as physical therapists
for optimal care is vital.”

CureDuchenne Cares services consists of hands-on educational events, an
educational website, video blogs, webinars, online FAQs, patient
registry and parent/caregiver resource guides. CureDuchenne Cares aims
to raise the standard of care and quality of life for children and young
adults living with Duchenne muscular dystrophy. For more information and
resources, go to www.CureDuchenneCares.org.

CureDuchenne Cares 2017 presenting sponsors are Sarepta Therapeutics and
Marathon Pharmaceuticals. Other CureDuchenne Cares sponsors include PTC
Therapeutics, Pfizer Inc and Bamboo Therapeutics, Santhera
Pharmaceuticals, and Invitae.

CureDuchenne was founded in 2003 with a focus on saving the lives of
those with Duchenne muscular dystrophy, a disease that affects more than
300,000 children and young adults worldwide. With support from
CureDuchenne, nine research projects have advanced to human clinical
trials. CureDuchenne also brings physical therapy and standard of care
to local communities around the country through its CureDuchenne
Cares
program. For more information, please visit CureDuchenne.org
and follow us on Facebook,
Twitter,
Instagram
and YouTube.

Contacts

CureDuchenne
Karen Harley
949-872-2552