http://www.raredr.com/news/lgmd-awareness-scholarship
LGMD Awareness Scholarship

Guest post by the Jain Foundation

The LGMD Awareness Scholarship program rewards students for spreading awareness of limb girdle muscular dystrophies (LGMDs) and other rare muscle diseases. In 2016, four $3,000 scholarships will be awarded. Scholarship money will be paid directly to each student’s institution and the money can be used for tuition, books and equipment required for educational courses.

Purpose of the Scholarship

The scholarship program was originally launched in January 2015 as the Jain Foundation Scholarship. The Jain Foundation’s mission is to support research and clinical projects that lead to the development of treatments for patients suffering from LGMD2B/Miyoshi myopathy, which is caused by mutations in the dysferlin gene. Since many undiagnosed patients with LGMD2B begin showing symptoms when they are in their late teens or early 20s, the scholarship was designed to target these individuals because many people in this age group are applying to post-secondary educational programs.

Both the students who apply and their friends learn about LGMD through the application process because the scholarship selection criteria include demonstrating the ability to spread rare disease awareness. An added benefit of targeting this age group is that many are social media experts and by harnessing their skills, this program will spread LGMD awareness further than ever before.
Currently, it can take decades for young patients with LGMD to become genetically diagnosed. The hope is that as more young people hear about these diseases, more patients with early symptoms will reach out to physicians and rare disease foundations to get diagnosed more quickly.

Success of the 2015 Scholarship

The 2015 scholarship was a huge success. Nearly 5,000 students applied for the Social Media Scholarship and they spread awareness to over 20,000 people. As more effort was required to apply for the Merit-Based Scholarship, fewer students applied. However, the nearly 300 students who did apply taught over 10,000 people about LGMD2B. Altogether, students applying to the scholarship spread awareness of LGMD2B over 30,000 people.

Improvements to the Scholarship Program

Given the tremendous success of the 2015 scholarship, the program has been extended and improved. The award amount has been increased to $3,000 per student from the original amount of $1,500.

Instead of focusing on a single LGMD, the information students learn has been broadened this year to encompass additional rare diseases. Applicants will learn and teach others about all LGMDs as well as other hereditary muscle-wasting conditions with similar symptoms including Pompe, FSHD (Facioscapulohumeral muscular dystrophy) and HIBM (Hereditary inclusion body myopathies) also known as GNE myopathy. By including all LGMDs, the Jain Foundation has been able to partner with other rare disease foundations to more broadly advertise the scholarship. This means that more students will hear about the program and as more students apply, the program will become more successful in spreading awareness of LGMDs and other rare muscle-wasting diseases.

Student Eligibility

Because the goal of the program is to spread awareness about rare muscle diseases as far as possible, all students between the ages of 17 and 30 who are attending an accredited US institution in any program are eligible to apply. This includes all students who will be attending 2 year colleges, 4 year colleges/universities, technical schools, trade schools, medical schools, law schools and graduate programs during the 2016-2017 school year.

Scholarship Categories and Deadlines

There are two scholarship categories, merit-based and social media. Students may apply for both scholarship categories but they will be awarded at most one scholarship.

Merit Based Scholarships - Students are ranked based on their academic achievements, extracurricular activities and leadership experience as well as their ability to teach others about LGMDs and other rare muscle diseases using the information provided. As part of the application process, students must demonstrate that they have spoken with at least 25 individuals about LGMDs by providing contact information for everyone they teach and answer essay questions about their experiences. Applications are available online and the 2016 deadline for merit-based applications is 12:00am on May 25.

Social Media Scholarships - Students applying for the social media scholarship post a fact about rare muscle diseases and a picture (optional) on the Scholarship App of the Jain Foundation Facebook page. Students then share their post on Facebook/Twitter with all of their friends and family to try to get as many votes as possible. To give all students an equal chance of winning regardless of when they hear about the scholarship, the application period is broken down into weekly contests so that all students have exactly one week to get as many votes as possible. Students can submit posts for as many weekly contests as they wish during the application period to try to improve their score and the more often they apply, the more people will learn about these diseases. The highest number of votes that a student earns during a single week is used in ranking the applicants. The social media scholarship application period began Wednesday, January 6th, 2016 and will run for 20 weeks, ending on Wednesday, May 25th, 2016 at 12:00am.

Supporting Foundations

The Jain Foundation is proud to have partnered with other rare disease foundations to help advertise the scholarship. These additional foundations have also provided assistance in expanding the disease information provided to students to encompass all LGMDs and other muscle diseases with similar symptoms. Supporting foundations: Cecil B. Day Family, Inc.; Coalition to Cure Calpain 3; FSH Society; LGMD2D Foundation; LGMD2I Research Fund; Kurt+Peter Foundation; Neuromuscular Disease Foundation; Team Titin.
 
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