Opis zdarzenia

The National Limb Girdle Muscular Dystrophy Conference is the first conference dedicated to finding safe, effective treatments for all forms of LGMD.  Patients and families are central to this series of conferences taking place over the course of the next few years and every LGMD patient is greatly encouraged to attend to bring awareness to the vast number living with LGMD.  We are pleased to be working closely with GRASP LGMD which is a consortium of leading neurologists internationally who will collaborate at our event along with major biotech companies on the cutting edge of emerging research.  The overall mission of this national conference is to provide momentum to emerging treatments by bringing together key stakeholders in the field.  This is the first in a series of yearly conferences led by the Speak Foundation, a 501 c3. 

Event tickets are non-refundable after purchase.  Anyone attending the conference over the age of 12, needs to register online.

For more information on the National LGMD Conference, please visit the conference website: www.nationallimbgirdlemusculardystrophyconference.com.

Conference Information

Hyatt Regency - 151 East Upper Wacker Drive - Chicago, Illinois

Conference Dates are Friday, August 30th to Monday, September 2nd, 2019                                             

Registration and check in for conference begins on Friday from 3:00 - 5:00 pm

Official conference begins Friday evening at 7 pm with a reception in honor of all LGMD patients who will meet the leading neurologists in the GRASP LGMD CONSORTIUM and meet major stakeholders in emerging treatments.

The mission of this conference is to provide momentum to emerging treatments. The goal is to find treatments that are fast, effective, and safe for all forms of LGMD.  Limb Girdle Muscular Dystrophy is a very serious, debilitating form of muscular dystrophy that primarily affects the muscle groups of the hips, arms, and legs.  Many subtypes also affect cardiac and breathing muscles which may lead to premature death.  Though forms vary, most individuals will use a wheelchair or mobility scooter eventually due to loss of ambulation.


Financial Assistance for Patients and Families

Ticket costs have been reduced for early bird registration to help patients and families.  However, the cost of your hotel room is not covered by the conference.  Event tickets are nonrefundable after purchase and ticket holders who cancel are ineligible for a ticket refund.  We are also very glad to announce there are a limited number of financial stipends available for those who are staying at the hotel overnight.  To be considered for a stipend, you must purchase our discounted early bird registration by Dec 31st, 2018 and you will have an opportunity to apply for the stipend in the purchase process for your ticket.  Priority will be given to those traveling and require airfare and are in financial need the most.  Those who live close enough where commuting is possible are not eligible for a stipend.  Eligible applicants will receive notification by Feb 15th if they are eligible for a stipend.  Stipends will be mailed to the individual after the conference is concluded.  Stipend amounts range from $200-350 per family based on availability.


Top Research from Leading Stakeholders

This is the first national conference for LGMD bringing together leading scientists, physicians, and biotech companies all in one place.  Meet others passionate about finding treatments and collaborate to find help for the patient dealing with muscular dystrophy.  Let's find a treatment,  inspire hope for thousands of families, and save lives.  Treatments have never been closer.  

a patient led movement to treat Limb Girdle Muscular Dystrophy

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