• 5 people are interested
 

Volunteer: Variety of Opportunities with a Rare Disease Nonprofit Organization

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ORGANIZATION: SAVING CASE & FRIENDS INC

  • 5 people are interested
Project Alive cast
Cast photo from Project Alive filming

At Saving Case & Friends, all we want to do is save kids. SCF is a 501(c)(3) non-profit volunteer organization dedicated to funding a cure for the devastating terminal condition Hunter Syndrome (also known as Mucopolysaccharidosis or MPS II). Hunter Syndrome affects almost exclusively boys who appear normal at birth and progressively lose the ability to walk, talk, play, and recognize the ones they love, with an average life span of 12-15 years old for the severe form. We are funding research with the potential to save this generation of kids.

The organization was founded by a mom who began advocating and blogging about the disease and its effects on her son after he was diagnosed at two years old. SCF works tirelessly to raise funds to support the most promising research opportunities to cure the condition. It is possible.

Headquartered in Middle Tennessee, SCF is recruiting volunteers to work locally or on a virtual basis to help with many activities including: donor database administration, grant writing, managing organization websites, blogging and social media administration, applying for in-kind donations for our fundraising events, coordinating event logistics and so much more! If you are interested in any or all of these opportunities, please contact us! We would love to hear from you. "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." - Margaret Mead

We are looking for individuals who want to embrace our Hunter Syndrome community of smart and passionate families, and beautiful and inspiring children, and in turn, individuals that our community would love to embrace in their dreams.

More opportunities with SAVING CASE & FRIENDS INC

No additional volunteer opportunities at this time.

About SAVING CASE & FRIENDS INC

Location:

PO BOX 384, THOMPSONS STATION, TN 37179, US

Mission Statement

Saving Case & Friends is a 501(c)(3) nonprofit Hunter Syndrome research & advocacy foundation. It exists to fund a cure for Hunter Syndrome / Mucopolysaccharidosis II through research, fundraising, and advocacy.

Description

SCF raises funds and then distributes them to research programs focused on Hunter Syndrome, as well as assisting third parties in designing research and clinical programs most likely to be successful in treating Hunter Syndrome. SCF also advocates with regulatory and legislative bodies, as well as industry, for policies supporting the most effective and efficient clinical research programs and compassionate use / expanded access protocols. Throughout its efforts, SCF places a high priority on raising awareness of Hunter Syndrome in the general public and healthcare communities.

CAUSE AREAS

Children & Youth
Health & Medicine
People with Disabilities
Children & Youth, Health & Medicine, People with Disabilities

WHEN

We'll work with your schedule.

WHERE

This is a Virtual Opportunity with no fixed address.

SKILLS

  • Data Entry
  • Technical Writing
  • Copy Writing / Copy Editing
  • Social Media / Blogging
  • Verbal / Written Communication
  • Administrative Support

GOOD FOR

  • Teens
  • People 55+

REQUIREMENTS

  • Must be at least 16
  • 5 hours/week

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