- A group opportunity. Invite your friends.
-
6 people are interested
Stronger Together Conference in Chicago - July 2019
ORGANIZATION: CURE CMD
Please visit the new page to apply.
- A group opportunity. Invite your friends.
-
6 people are interested
Join us this summer for Stronger Together: 2019 Scientific and Family Conference, held at the Renaissance Downtown Chicago Hotel this July.
Check out our video from the last event: https://youtu.be/m6PtICzoB5Q
This event will bring together three congenital muscle disease nonprofit groups: Cure CMD (www.curecmd.org), A Foundation Building Strength (www.buildingstrength.org), and Team Titin (www.titinopathy.org), focused on three different but similar genetic neuromuscular conditions: Congenital Muscular Dystrophy, Nemaline Myopathy, and Titinopathy, respectively. While parents and caregivers learning the latest in care practices and research, young attendees will be able to bond with each other, watch a live small animal show, and see a superhero balloon magic show, sing karaoke, and more.
The conditions studied at this conference vary in severity from person to person. Many children will be in wheelchairs while others will still have the ability to walk. Regardless, we'll all be present to talk about improving the quality of life for those with rare neuromuscular diseases, how to self-advocate, and what's happening in research toward treatments and a cure.
For full information, please visit the event website at scifam.info.
More opportunities with CURE CMD
No additional volunteer opportunities at this time.
About CURE CMD
Location:
19401 S VERMONT AVE, STE J100, TORRANCE, CA 90502, US
Mission Statement
Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies (CMD), and to improve the lives of those living with CMD through engagement and support of our community. Through Cure CMD's mission for research and support, the organization serves as a leader among rare disease organizations, forging pathways for innovation and collaboration and raising awareness for CMD.
Description
Based out of Torrance, CA, Cure CMD also holds events across the country and internationally to serve scientists and families seeking knowledge and information about Congenital Muscular Dystrophy.
The organization was founded in 2008 by three parents whose children were diagnosed with congenital muscular dystrophy and today, Cure CMD is a leading source of research news, support, and connections to CMD experts with a global network of 2,000+ affected children, adults, and family members.
Cure CMD has helped to initiate and continue numerous research projects since 2008, awarding more than $2M to leading scientists studying CMD. However, numerous gaps in knowledge about CMD still exist. Fortunately, with an initial natural history study complete, COL6-CMD is now the focus of a recently successful Stage 1 clinical trial that tested the compound Omigapil for safety in children and adolescents. Initial results are promising, and with other strategies including CRISPR/Cas9 gene editing and other management techniques on the horizon, CMD is one of the most exciting and fast-growing areas of rare disease research.
CAUSE AREAS
WHEN
WHERE
Renaissance Chicago Downtown Hotel1 W Wacker Dr.Chicago, IL 60601
DATE POSTED
May 21, 2019
SKILLS
- Children Medical Services
- Program Management
- Event Planning / Management
- Ushering
- CSR / Volunteer Coordination
- People Skills
GOOD FOR
- People 55+
- Group
REQUIREMENTS
- Background Check
- Must be at least 25
- Individuals can volunteer all-day for two days, one day, or can volunteer in half-day (5-hour) segments.
- This opportunity is simple. Tasks that may be requested of the volunteer include, but are not limited to: directing human traffic, taking tickets, handing out goody bags, distributing and collecting flyers, running microphones, and similar tasks.