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61 Reviews
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September 9, 2013

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September 9, 2013

Life before BSF can be characterized by one word, isolation. Isolation from informed doctors and researchers, from necessary services, from other affected boys and families, and from support of any nature.
Life since BSF can be characterized by one word, teamwork. Teamwork amongst doctors and
researchers, services providers, affected boys and their families, and support from all involved!
BSF is HOPE, for a treatment, a cure, for a better life for all our boys/young men!

Ways to make it better...

If I had to make changes to this organization, I would...

Include discussion and possibilities for the participation of, and services for the young adult population of BSF.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 5, 2013

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September 5, 2013

I have been involved in a number of volunteer organizations and have to say the BSF group is quite outstanding. Started from a small set of dedicated volunteers, this group went from being concerned parents to a highly professional organization that is driving research and results for the affected population around the world. Everyone involved cares deeply about the families and the affected boys and men, and it shows in everything they do. As a parent, I know I always have the backing of the organization and if my affected son ever gets into trouble, he will be able to get help from the world's experts on this condition. As a donor I know my funds are well spent and leveraged for maximal effect. As a volunteer I know every hour I can spend makes a difference. I have learned and grown with this organization, both as a volunteer and as a family member of an affected individual. I can't thank them enough.

Ways to make it better...

If I had to make changes to this organization, I would...

Find a way to get the members together more often, especially the affected individuals.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

November 15, 2012
4 people found this review helpful

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November 15, 2012
4 people found this review helpful

Those who have been touched in any way by this rare (but way underdiagnosed) disease understand how inportant this work and our support are.

More feedback...

Would you volunteer for this group again?

Unsure

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2012

November 13, 2012
7 people found this review helpful

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November 13, 2012
7 people found this review helpful

I met Lindsay Groff through a mutual friend and she introduced me to the Barth Syndrome Foundation (BSF). I didn't know much about the foundation but she really inspired me to want to know more. I explored on the website and found out more about the disease. When Lindsay asked me if I was interested in volunteering to help out the organization I jumped at the opportunity. I think the foundation is great. There aren't a lot of resources out there for this particular disease and I think the BSF is making huge strides to help in the fight. This foundation may be small but they have a huge voice. I'm very proud to say I could help out the BSF.
November 9, 2012
4 people found this review helpful

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November 9, 2012
4 people found this review helpful

Barth Syndome Foundation is a FAMILY of HOPE & LOVE that is centered around boys affected with Barth. This family consists of the boys, their parents, grandparents, aunts, uncles, friends, doctors, researchers, volunteers and more. I became involved because my husband does research on Barth. I was welcomed immediately & felt a tremendous desire to help. BSF focuses on finding a cure while loving these boys & their families through the process- connecting real people with resources, friendships & lifeline.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

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