Apr
21
Sat
2018
Information Day 2018 for LGMD
Apr 21 @ 9:00 am – 4:30 pm
11th Annual Dancing For A Cure @ Fearless Fire Company
Apr 21 @ 6:00 pm – 11:45 pm

1th Annual Dancing For A Cure

Organized by:  Beyond Labels & Limitations, Inc.

Where: Fearless Fire Company, 1221 South Front Street, Allentown PA

When: Saturday, April 21, 2018

Time: Doors open at 6pm

Tickets: $10per/person in advance/15$ at the door (message for tickets)

Music: “Flirtin with THE MOB”

Sponsor: “Houser Plessl Wealth Management Group”

Benefits: Research for Limb Girdle Muscular Dystrophy 2A

Jul
6
Fri
2018
10th Annual Speak Foundation Conference @ Westin Buckhead Atlanta
Jul 6 – Jul 8 all-day
Jul
14
Sat
2018
The Dystroglycanopathies: 2018 Patient and Family Conference @ Coralville Marriott Hotel & Conference Center
Jul 14 all-day
Sep
30
Sun
2018
4th Annual LGMD Awareness Day @ 4th Annual Global LGMD Awareness Day
Sep 30 all-day
Apr
6
Sat
2019
Info Day – MDUK @ Crown Plaza, Newcastle – Stephenson Quarter
Apr 6 all-day

Join Muscular Dystrophy UK for an Information Day with sessions tailored specifically for anyone living with LGMD. It’s free and you’ll hear about progress in research and clinical developments relating to LGMD. Equally importantly, you’ll get to meet others living with the condition, and you’ll even get lunch!

Date: Saturday 6 April

Time: TBC

Location: Crown Plaza, Newcastle – Stephenson Quarter, Hawthorn Square, Forth Street, Newcastle Upon Tyne, NE1 3SA

Leading researchers and clinicians will be there to tell you about the latest research and healthcare. There will also be a range of exciting condition specific workshops around independent living.

You’ll get to meet others living with muscle-wasting conditions and enjoy a day filled with practical advice and information about improving your quality of life.

The Muscular Dystrophy UK  advocacy team will also be on hand to answer any questions you may have about getting the services and equipment you are entitled to.

The booking for this event will be on a first-come, first served basis, to reserve your free place please visit https://www.musculardystrophyuk.org/events/research-and-information-day/ 

If you have any questions about the day please get in touch with us on 08006526352 or email infoday@musculardystrophyuk.org

Lunch will be provided but please be aware there are no crèche facilities on the day.

 

May
18
Sat
2019
2019 MDA Engage Limb-Girdle Symposium @ Hilton Garden Inn Richmond Innsbrook
May 18 @ 8:00 am – 5:00 pm

There is no cost to attend the event, however, registration is required.
Register by Friday, May 10, 2019, online at https://mda.secure.force.com/eventRegistration/?id=7012L000001E6fT

Registration & Breakfast: 8:00am-8:45am
Event: 9:00am-4:00pm (lunch included)
Social Hour: 4:00pm-5:00pm

  • Keynote Presentation – Clinical Trials in LGMD
    • Nicholas Johnson, MD, MS-CI, Virginia Commonwealth University
  • Drug Development Round Table
    • Moderator – Scott Vota, DO, Virginia Commonwealth University
  • MDA Spotlight
    • Sarah Arndt and Niki Benfield

Learn more at https://www.mda.org/care/mda-engage/disease-symposia/limb-girdle-symposium-2019

Jun
22
Sat
2019
The Dystroglycanopathies: 2019 Patient and Family Conference @ Coralville Marriot Hotel & Conference Center
Jun 22 all-day

Join us for The Dystroglycanopathies: 2019 Patient & Family Conference!

REGISTRATION
To register for the conference, please click here to download the registration form. Completed forms should be sent to the Center for Conferences via email (conferences@uiowa.edu), fax (319-335-4039), or mail (UI Center for Conferences, 250 CEF, Iowa City, IA 52242). You may also call the Center for Conferences directly to register over the phone at 319-335-4141.
The deadline to register is May 31, 2019. 

LOCATION
Marriott Hotel & Conference Center
300 E. 9th Street
Coralville, IA 52241

ROOM BLOCK
Hotel rooms are available at a reduced rate ($115 per night + taxes and fees) at the Marriott for conference attendees. To reserve a room at the conference rate, please call the Marriott Hotel at 319-688-4000 and reference the “UI Wellstone Muscular Dystrophy Conference”. You may also book your room online by clicking hereYou must make your room reservations by May 31st in order to receive the conference rate.

 

 

Jun
28
Fri
2019
The Speak Foundation 11th Annual Conference for Individuals with Neuromuscular Disorders & their Loved Ones @ Westin Buckhead Atlanta
Jun 28 @ 4:00 pm – Jun 30 @ 2:00 pm
Aug
30
Fri
2019
National LGMD Conference @ Hyatt Regency Chicago
Aug 30 @ 2:00 pm – Sep 2 @ 6:00 pm
Sep
30
Mon
2019
5th Annual LGMD Awareness Day @ Worldwide
Sep 30 all-day
Oct
5
Sat
2019
9th Annual Casino Night for CureLGMD2i @ Eden Resort & Suites
Oct 5 @ 6:00 pm – 11:00 pm

We will be hosting our 9th Annual Casino Night event on at the Eden Resort in Lancaster, PA on October 5th and our 3rd Annual Golf Outing at Crossgates in Millersville on October 12th, 2019. It would be great if you could attend one or both of these great events! Please consider offering a gift certificate, gift basket, or prize to be auctioned. We are also looking for corporate sponsors of various levels. In turn, your company will be recognized in our e-newsletter, on our website, and at the event. We are a 501(c)(3) approved public charity and, as such, your donation is tax-deductible. We appreciate any support that you may have to offer. To find out more about our cause, please visit our website at: www.curelgmd2i.com.

“If you prefer to mail in your registration and pay by check – click on this link for the printable registration form:

Casino_Golf Registration 2019.pdf

Thank you so much for your interest and support!

Keith & Kelly Brazzo,
Co-Founders of CureLGMD2i

590 Centerville Road #340

Lancaster, PA 17601

(717) 405-7518
Tax ID#: 80-06804

Oct
12
Sat
2019
3rd Annual Golf Outing for CureLGMD2i @ Crossgates Golf Club
Oct 12 @ 9:00 am – 11:45 pm

We will be hosting our 9th Annual Casino Night event on at the Eden Resort in Lancaster, PA on October 5th and our 3rd Annual Golf Outing at Crossgates in Millersville on October 12th, 2019. It would be great if you could attend one or both of these great events! Please consider offering a gift certificate, gift basket, or prize to be auctioned. We are also looking for corporate sponsors of various levels. In turn, your company will be recognized in our e-newsletter, on our website, and at the event. We are a 501(c)(3) approved public charity and, as such, your donation is tax-deductible. We appreciate any support that you may have to offer. To find out more about our cause, please visit our website at: www.curelgmd2i.com.

“If you prefer to mail in your registration and pay by check – click on this link for the printable registration form:

Casino_Golf Registration 2019.pdf

Thank you so much for your interest and support!

Keith & Kelly Brazzo,
Co-Founders of CureLGMD2i

590 Centerville Road #340

Lancaster, PA 17601

(717) 405-7518
Tax ID#: 80-0680447

Oct
15
Tue
2019
MDA’s Public Policy and Advocacy Conference @ Grand Hyatt Washington
Oct 15 @ 4:30 pm – Oct 17 @ 5:30 pm
Nov
8
Fri
2019
LGMD Patient Event @ Wong Kerlee International Conference Center
Nov 8 @ 9:30 am – 3:00 pm

LOMA LINDA UNIVERSITY AND THE JAIN FOUNDATION

are hosting the

LGMD PATIENT EVENT

RSVP by 10/15/2019 via email to patients@jain-foundation.org

Vegetarian lunch included – please note in RSVP if you require gluten free or vegan

Learn about:

  • Advancements and innovative technology in LGMD
  • Current and future directions for drug development
  • Orthotics, stretching and exercise
  • Diagnostics

Ask Questions and connect with other patients