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Children and Teen Program Volunteer

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SOFT BONES INC THE US HYPOPHOSPHATASIA FOUNDATION

  • 6 people are interested
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Seeking a Volunteer To Help Organize, Further Develop and Work With Children and Teens in Our New Groups and Youth Programs!

Looking to give back in your community? Love working with kids and teens? Tech-savvy?

Now is your chance to share your time and talent with a vital organization assisting families affected by a rare bone disorder known as hypophosphatasia (HPP). Small, friendly office located in Parsippany, NJ serving children, teens, adults and families throughout the US and internationally is seeking a volunteer to work directly with staff, children/teen patients and families to assist with the development and day-to-day administration of our children's group (The Hippo Squad) and Teen Advisory Council (TAC).

Our organization requires the assistance of a skilled and passionate volunteer who can provide hands-on support for staff, while serving as a patient liasion for both of our youth-oriented groups. Duties include: administrative projects, program support and planning, direct contact with group members via phone/video chat, group chat leader responsibilities as needed, and other duties to administer the program as assigned. Experience using Canva or similar design programs, as well as social media is a plus, but not required. Experience working with clubs, youth organizations or similar areas is also a plus, but not required. Experience working with children/teens a must, patient support/disease experience also helpful but certainly not required.

This is a great opportunity to get hands-on experience and support new and growing programs to benefit children and teens! Students, professionals and retirees are all welcome, however we do require a long-term commitment for this role.

Extremely flexible hours, with mostly remote work possible.

Please contact bonnie@softbones.org if interested and available asap.

2 More opportunities with SOFT BONES INC THE US HYPOPHOSPHATASIA FOUNDATION

About SOFT BONES INC THE US HYPOPHOSPHATASIA FOUNDATION

Location:

121 HAWKINS PLACE SUITE 267, BOONTON, NJ 07005, US

Mission Statement

The mission of Soft Bones, Inc. is to provide valuable information, education and support for people living with hypophosphatasia (HPP), their families and caregivers. The Foundation promotes research of this rare bone disease through awareness and fundraising efforts.

Description

Founding:

Our founder's son was just 4 months old when she started to notice something was a little bit off. His wrists looked wide. He did not bear weight on his legs. He was not a strong sitter. Their pediatrician blamed it on low muscle tone and said this one "won’t be our athlete." But they could not let it go. What was causing the low muscle tone? Why did his wrists look like that?

That is when the obsessive research began. Our founder frantically scoured patient forums, read every possible website, emailed and chatted with patients, and conducted endless Google searches into all hours of the night.

At 18 months old, they finally had a diagnosis: hypophosphatasia (HPP). That was the one web search with results that left me breathless. Children diagnosed with HPP have a 50 percent chance of survival. Many go on to do quite well.

It was that single phrase that led us to start Soft Bones: The U.S. Hypophosphatasia Foundation. It was shocking to learn that there was no formal website with information on the condition. No place we could send friends and family who wanted to make a donation or learn more about HPP. Soft Bones was founded in 2009, after our founder's son was diagnosed with HPP, as a resource to help individuals and families to understand, manage, find proper care and promote adovcacy and research for this rare and potentially life-threatening disorder.

Children & Youth
Community
Education & Literacy

WHEN

We'll work with your schedule.

WHERE

This is a Virtual Opportunity, with no fixed address.

SKILLS

  • General Education
  • Youth Services
  • Administrative Support
  • Program Management
  • Child Development

GOOD FOR

  • Kids
  • Teens

REQUIREMENTS

  • Must be at least 18
  • Flexible, can perform work around your own schedule. Some meetings required, and can set own schedule for those as well.

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