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September 2018

9th Annual Cruisin’ for a Cause – to Benefit CureDuchenne

September 16, 2018 @ 1:00 pm - 5:00 pm PDT
$10

Music - Door Prizes - Food - Goody Bags - Arts & Crafts Show - Silent Auction - Display/Model Car Contest - Custom Handmade Trophies // Entry fee is $10 // All proceeds got to Duschenne Muscular Dystrophy Registration 1:00p - 3:00p Show 3:00p - 5:30p Trophy Ceremony 5:30p

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Continuing Education | Duchenne: Current Understanding and Treatment – Nashville, TN

September 21, 2018 @ 8:30 am - 4:30 pm EDT
Renaissance Nashville Hotel, 611 Commerce St
Nashville, TN 84101 United States
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$130

This course is ideal for physical therapists, occupational therapists, speech language pathologists, and others involved in the care of persons with Duchenne.

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Family & Caregiver Workshop – Nashville, TN

September 22, 2018 @ 8:00 am - 3:30 pm MDT
Renaissance Nashville Hotel, 611 Commerce St
Nashville, TN 84101 United States
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Free

Please join CureDuchenne Cares for a free, informative class on Duchenne muscular dystrophy, focused on educating parents and caregivers on the best standard of care for Duchenne management.

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October 2018

A Napa Night

October 4, 2018 @ 6:00 pm - 7:00 pm PDT
A Napa Night - Mascot

Venue - A private home in Dedham, MA.
Address to be provided to confirmed guests.
Champagne & hors d’oeuvres upon arrival.
Two courses paired with The Mascot’s 3 Vintages 2011, 2012 & 2013.
Dessert paired with a complementary wine from Europe.

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Continuing Education | Duchenne: Current Understanding and Treatment – Buffalo, NY

October 12, 2018 @ 8:30 am - 4:30 pm EDT
Marriott Buffalo Harborcenter, 95 Main St
Buffalo, NY 14203 United States
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$130

This course is ideal for physical therapists, occupational therapists, speech language pathologists, and others involved in the care of persons with Duchenne.

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Family & Caregiver Workshop – Buffalo, NY

October 13, 2018 @ 8:00 am - 3:30 pm MDT
Marriott Buffalo Harborcenter, 95 Main St
Buffalo, NY 14203 United States
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Free

Please join CureDuchenne Cares for a free, informative class on Duchenne muscular dystrophy, focused on educating parents and caregivers on the best standard of care for Duchenne management.

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All in for Duchenne 2018

October 13, 2018 @ 6:00 pm - 11:00 pm EDT
Sylvania Tam-O-Shanter, 7060 W Sylvania Ave
Sylvania, Ohio 43560
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$100

The 6th Annual All in for Duchenne to benefit Braedan’s Bridge is happening in Sylvania, OH on October 13, 2018. This sports-themed event will feature games, raffles, silent auction, and dinner by Jed’s Barbeque and Brew!

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Blingo to CureDuchenne

October 13, 2018 @ 7:00 pm - 11:00 pm EDT
LOEWS Philadelphia Hotel, 1200 Market St
Philadelphia, PA 19107 United States
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BLINGO is a night of bingo, bling and celebration where Philadelphians come together to make a huge difference for hundreds of thousands of boys suffering from Duchenne.

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Dealing for Duchenne – San Antonio

October 20, 2018 @ 6:00 pm - 11:00 pm CDT
Pedrotti’s North Wind Ranch, 13715 Fm 1560 N
Helotes, Texas 78023
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Dealing for Duchenne - San Antonio, benefitting UT Southwestern and Dr. Eric Olson, is a “Night of Hope” that connects the San Antonio community to a global network of families, caretakers, doctors, researchers and philanthropic-minded people like you, to help find a cure for children and young-adults with Duchenne muscular dystrophy.

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November 2018

Napa in New England

November 10, 2018 @ 7:00 am - 10:00 pm PST
Bond @ The Langham, 250 Franklin St
Boston, MA 02110 United States
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Join us for an Extraordinary Evening Benefiting CureDuchenne Wine connoisseurs and epicureans across New England can now experience some of the finest wines from California’s Napa Valley, right in our own backyard.  Cult wine brands, exquisite cuisine and unparalleled auction lots featured at Napa in New England will transport you to a world that unites renowned vintners and wine enthusiasts for a truly unforgettable experience. During the Grand Tasting, guests are treated to coveted wines served alongside spectacular culinary creations…

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December 2018

Steroid Use in Duchenne: Expert Dialogue on Latest Data

December 11, 2018 @ 7:00 pm - 8:00 pm EST

Healthcare professionals, personal caregivers, and family members of those with Duchenne muscular dystrophy will have an opportunity to learn about new data and best practices for steroid use in Duchenne during a live broadcast webinar on Tuesday, December 11, at 7:00 PM ET. This free web broadcast, sponsored by CureDuchenne, will feature 3 physician experts and an experienced Duchenne parent/caregiver in dialogue. Participants will be able to ask and answer questions in the interactive format. Hosted by Emma Ciafaloni, MD,…

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January 2019

Family & Caregiver Session – Little Rock, AR

January 11 @ 6:00 pm - 8:00 pm CST
Samantha’s Tap Room & Grill, 322 Main St
Little Rock, AR 72201 United States
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Join us for insightful presentations from clinicians and experts as well as an opportunity to connect with other members of the Duchenne community. Free event. Meal included. Agenda:  6:00 PM – 6:05 PM Welcome and Introductions Bill Abernethy, Senior Vice President,CureDuchenne 6:05 PM – 6:20 PM CureDuchenne Overview CureDuchenne 6:20 PM – 7:05 PM Clinical and Research Presentation Joline Dalton, Genetic Counselor, Univ of Minnesota 7:05 PM – 7:25 PM Families Helping Families CureDuchenne 7:25 PM – 7:35 PM Let’s…

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Family & Caregiver Session – Atlanta, GA

January 12 @ 12:00 pm - 2:00 pm EST
Piastra, 45 West Park Square
Marietta, GA 30060 United States
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Join us for insightful presentations from clinicians and experts as well as an opportunity to connect with other members of the Duchenne community. Free event. Meal included. Agenda:   12:00 PM – 12:05 PM Welcome and Introductions Bill Abernethy, Senior Vice President, CureDuchenne 12:05 PM – 12:20 PM CureDuchenne Overview CureDuchenne 12:20 PM – 1:05 PM Clinical and Research Presentation Paige Lembeck, PhD, Pediatric Psychologist and Assistant Clinical Professor at the Yale Child Study Center 1:05 PM – 1:25 PM Families Helping…

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Family & Caregiver Session – Indianapolis, IN

January 18 @ 6:00 pm - 8:00 pm CST
Meridian Restaurant & Bar, 5694 N. Meridian St.
Indianapolis, IN 46208 United States
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Join us for insightful presentations from clinicians and experts as well as an opportunity to connect with other members of the Duchenne community. Free event. Meal included. Agenda: 6:00 PM – 6:05 PM Welcome and Introductions Tiffany Cook, MS, CCC-SLP, Family Resource Manager, CureDuchenne Kylee Groon, Community Engagement Manager, CureDuchenne 6:05 PM – 6:20 PM CureDuchenne Overview CureDuchenne 6:20 PM – 7:05 PM Clinical and Research Presentation Joline Dalton, Genetic Counselor, Univ of Minnesota 7:05 PM – 7:25 PM Families Helping Families…

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Family & Caregiver Session – San Jose, CA

January 19 @ 12:00 pm - 2:00 pm PST
Il Fornaio, 302 South Market Street
San Jose, CA 95113 United States
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Join us for insightful presentations from clinicians and experts as well as an opportunity to connect with other members of the Duchenne community. Free event. Meal included. Please submit only one registration form per group. For registration, click HERE. Agenda:  12:00 PM – 12:05 PM Welcome and Introductions Tiffany Cook, MS, CCC-SLP, Family Resource Manager, CureDuchenne Kylee Groon, Community Engagement Manager, CureDuchenne 12:05 PM – 12:20 PM CureDuchenne Overview CureDuchenne 12:20 PM – 1:05 PM Clinical and Research Presentation Missy Dixon, Visiting…

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Continuing Education Course – Breckenridge, MN

January 25 @ 8:30 am - 4:30 pm CST
Orthopedic & Sports Physical Therapy, Inc, 430 5th Street N.
Breckenridge, MN 56520 United States
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Registration for just the course is $130. For more information and registration, click HERE. Course Schedule 8:00-8:30: Registration and sign in 8:30-9:30: General Introduction to Duchenne: Incidence, Etiology, Diagnosis, Pathology 9:30-10:30: Typical Progression and Client Presentation 10:30-10:45: Break 10:45-11:15: Concurrent Medical Interventions, Comorbidities 11:15-12:30: Evaluation and Intervention  (Therapy and surgical) 12:30-1:30: Lunch 1:30-2:15: Exercise, Activity for Duchenne 2:15-3:15: Mobility Equipment with Demonstration 3:15-3:30: Break 3:30-4:30: Case Studies, extensive treatment plan development. 4:30: Post Test and Course Evaluations 4:30-5:00: CureDuchenne Cares…

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February 2019

Family & Caregiver Session – Irvine, CA

February 2 @ 12:00 pm - 2:00 pm PST
TAPS Fish House & Brewery, 13390 Jamboree Rd. (In the Market Place)
Irvine, CA 92602 United States
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Join us for insightful presentations from clinicians and experts as well as an opportunity to connect with other members of the Duchenne community. Free event. Meal included. For registration click HERE. Agenda:  12:00 PM – 12:05 PM Welcome and Introductions Eunice Miranda, Director of Special Events, CureDuchenne Cares 12:05 PM – 12:20 PM CureDuchenne Overview CureDuchenne 12:20 PM – 1:05 PM Clinical and Research Presentation Paige Lembeck, PhD Pediatric Psychologist and Assistant Clinical Professor at the Yale Child Study Center 1:05 PM…

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Continuing Education Course – Raleigh, NC

February 8 @ 8:30 am - 4:30 pm EST
Renaissance Raleigh North Hills Hotel, 4100 MAIN at NORTH HILLS St.
Raleigh, NC 27609 United States
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Early registration for just the course is $130 (1/25/19 or before), while early registration for the course with the   component is $180. Regular registration for just the course is $165 (1/26/19 or after), while regular registration for the course with the Cares PT certification component is $215. For more information and registration, click HERE. Course Schedule 8:00-8:30 Registration and sign in 8:30-9:30 (60 min) General Introduction to Duchenne: Incidence, Etiology, Diagnosis, Pathology 9:30-10:30 (60 min) Typical Progression and Client Presentation…

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Raleigh CureDuchenne Cares Workshop

February 9 @ 8:00 am - 3:00 pm EST
Renaissance Raleigh North Hills Hotel, 4100 MAIN at NORTH HILLS St.
Raleigh, NC 27609 United States
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Register here. Agenda:  8:00 AM Registration | Breakfast  9:00 AM – 12:00 PM Keynote Speaker: Edward C. Smith, MD, Duke University | Clinical Trials & Research Updates  12:00 PM – 12:45 PM Lunch | Pharma - Patient Advocacy Group Presentations 12:45 PM – 3:00 PM Physical Therapy | Family Support | Fundraising

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Love Cures

February 16 @ 6:00 pm - 10:00 pm PST
Del Sur Ranch House, 15455 Paseo Del Sur
San Diego, CA 92127 United States
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Love Cures is inspired by the Etienne and Filenko families. From worlds apart, these families settled in San Diego and, by circumstance, connected through the love of their young sons, Yannick, 6, and Marko, 7. Both boys were diagnosed with a rare condition called Duchenne muscular dystrophy, a progressive muscle wasting disease that slowly strips away a patient’s ability to run, walk, hug and, eventually, breathe. The initial diagnosis was isolating for both families, as they didn’t know anyone else…

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