Myotonic Dystrophy Foundation

You are invited to the 9th annual family conference on myotonic dystrophy, October 3-4, 2009 in Manhattan Beach, California.  The sponsoring groups are bringing important research updates, information about diagnosis, treatment, and daily living issues to assist individuals living with myotonic dystrophy, families, healthcare providers and the community. 

Myotonic Dystrophy Assistance & Awareness Support Group (MDAASG)
University of Southern California (USC-KECK) School of Neurology
St. Francis Medical Center (SFMC)
Muscular Dystrophy Association (MDA)
Myotonic Dystrophy Foundation (MDF)
International Myotonic Dystrophy Consortium (IDMC-7)
A Healthy Life for Every One (AHLIFE)

together present the

9th Annual Myotonic Dystrophy Conference

“REACHING OUT for HELP”

October 3-4, 2009

Marriott – Manhattan Beach
1400 Parkview Ave. Manhattan Beach, California

Medical CME Seminar, Family Workshops and Conference

RSVP Required
Admission FREE

Saturday, October 3rd

8:00 a.m - 10:00 a.m
Registration & Continental Breakfast
Foyer/Salon A

10:00 a.m. - 10:30 a.m.
Welcome and Announcements
Introduction to Positive Exposure
Salon A

MDF FAMILY WORKSHOPS

Interactive breakout session is designed to focus on specific needs of families living with myotonic dystrophy.  You will work with healthcare professionals and other families to design best practices guidelines for the topics discussed in each individual workshop.  You will walk away from these workshops with new ideas, friends and more informed.  Workshops run simultaneously so please plan on attending only one workshop.  Lunch buffet is included in the workshop.

10:30 a.m. - 3:30 p.m.

CONGENITAL/CHILDHOOD MYOTONIC DYSTROPHY WORKSHOP
Shore Conference Room
You will have a chance to share your personal experiences with other families.  This is a wonderful networking and learning opportunity.  Luncheon buffett is included in the workshop.

MYOTONIC DYSTROPHY TYPE 2 (DM2) WORKSHOP
Conference Room 205/207
Facilitated by MDF Board Member, John Brekka, this workshop is designed to be both interactive and educational.  Speakers will be discussing topics of particular interest to DM2 patients and their families.

CAREGIVERS WORKSHOP
Conference Room 219/225
Designed to give caregivers an unrestricted, open forum to discuss their feelings and concerns, this workshop is limited to people who do not have myotonic dystrophy.

Complimentary On-site Childcare available
9:30 a.m. - 3:45 p.m. Advanced Registration Required for Childcare
Conference Room 200B

5:00 p.m. - 11:00 p.m.
Myotonic Horizon 2009 - View To a Cure Fundraiser
Redondo Beach Performing Arts Center
NIght at the theatre - stage performance of Oklahoma
Tickets are $100 per person.  Contact Alice Gunderson for more information

MDAASG YOUNG ADULT WORKSHOP

(RSVP Mandatory)
Young Adult Workshop is an opportunity for those 16 years of age through late 30s with cognition, social skills and physical challenges to meet others.  The focus for the young adult to learn about myotonic dystrophy and how to manage their health issues.

9:00 a.m. - 3:00 p.m.
Marriott Hotel Room 230
Speech/Swallow, Nutrition, GI Issues, and Addictive Personalities
Barry Cohen, PhD, Kathleen Austria, RTC CTRS, Reggie Smith, SLP

5:00 p.m. - 11:00 p.m.
Myotonic Horizon 2009 - View To a Cure Fundraiser
Redondo Beach Performing Arts Center
NIght at the theatre - stage performance of Oklahoma
(this event is being underwritten for the Young Adults by the MDAASG)

11:30 p.m. - a.m.
Pizza Party
Marriott Hotel Room 230

Sunday October 4th

USC/KECK, SFMC, IDMC-7, AHLIFE MEDICAL CME SEMINAR (Healthcare Professionals only)

Terrace A

8:00 a.m.
Registration and Breakfast

8:30 a.m. - 11:00 a.m.
Seminar

"Patients Reaching Out for Help...Providers Reaching Back with Knowledge and Communication"
Myotonic muscular dystrophy is a progressive, neuromuscular disease affecting multiple systems and multiple generations.

Program Outcomes
At the conclusion of this seminar, the participants will be able to:

• Describe the current research trends in myotonic dystrophy and their impact on clinical care.
• Describe the effects of aneasthesia in the early, mid and late stages of myotonic dystrophy.
• Outline and apply to cases the judicious use and non-use of pain medications and muscle relaxants.

Program Attendance Includes:
Seminar based learning experience with experts in the specialty fields and myotonic dystrophy.
CME credits: AM - 2.5, PM - 2.0
Nursing Continuing Education hours: AM - 2.5, PM - 4.0
Syllabus, Breakfast and handouts.

Speakers:
Phillip D. Lumb, MBBS, FCCM
USC Keck School of Medicine

Charles Thornton, MD
Co-Director URMC Wellstone Muscular Dystrophy Research Center
Co-Diretor MDA Muscular Dystrophy Clinic
2002 and 2008 MDAASG Medical Research Recipient

MDA FAMILY CONFERENCE

10:00 a.m. - 5:00 p.m.
Grand Ballroom

REACHING OUT FOR HELP!!
Family Management of Myotonic Dystrophy

10:00 a.m. - 12:00 p.m.
Registration, Exhibitors and Luncheon Buffet

12:00 p.m. - 5:00 p.m.
Program

Rx Management - Anesthesia, Muscle Relaxants and Pain Medication
Phillip D. Lumb, MBBS, FCCM

Research - 5 years for a treatment/cure - Is it possible?
Clinical Management of Myotonic Dystrophy
Charles Thornton, MD

Transition - Helping make the move to independence
MDA National Representative

Summary of Workshops
Congenital/Childhood, DM2, Caregivers and Young Adults

"How do I fit into the treatment/cure equation?"
Alice Gunderson

Complimentary On-Site Childcare available
11:45 a.m. - 5:15 p.m. Advanced Registration Required for Childcare
Conference Room 200B

Special Marriott blocked “MDA” room rates are available at the Manhattan Beach Marriott. Call (310)-546-7511

Print the conference flyer (updated 8/29/09)