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11 Reviews
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June 26, 2010

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June 26, 2010

I participated in OHF's first annual walk in Raleigh, NC and thought the walk was the perfect length, the perfect location, and really well-organized. It was a great family outing for all ages, and most importantly, raised awareness and money to fight this disease. I know that OHF has helped my family immensely and you can tell by the enthusiasm of the leaders how passionate they are about this organization.

The Great!

I've personally experienced the results of this organization in...

talking to people affected by this disease and seen how much OHF has helped and supported them.

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How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2009

June 25, 2010

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June 25, 2010

The OHF is a great organisation. It provides funds for much needed research into diagnosis and treatment of primary hyperoxaluria as well as information and support for affected patients and families.

The Great!

I've personally experienced the results of this organization in...

their support of scientific meetings and family workshops

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

It has been my privlege to work with the outstanding staff and volunteers in OHF. The first walk to raise needed funding for OHF research in NC was held in Raleigh last Fall. As a former executive director of a non-profit, I was amazed at the outstanding job the staff did in carrying out this first-time event. They were extremely well organized. The event was well planned and the morning went as smoothly as anyone could have hoped. The OHF staff is composed of caring, dedicated and enthusiastic professionals. As mother of a son diagnosed with OHF in 1995 as a senior in college, I will be forever indebted to this Foundation, its staff and volunteers for the job they do to help stamp out this rare disease that impacts the lives of so many young, vibrant children. Many thanks to all!! Sandra Drum, mother of Jon Anglemyer

The Great!

I've personally experienced the results of this organization in...

the first Walk for OHF in November, 2009; enjoy the outstanding newsletters and updates; communications from the ED are excellent, informative and timely

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2009

June 25, 2010

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June 25, 2010

I suffer from Primary Hyperoxaluria. The incredibly hard work done by the folks at the OHF have raised thousands of dollars to seek out a cure for this devastating illness. It is not a well known disease, but this charity does a great job of not only raising awareness in the community, but is working hard to find a cure. As someone who has suffered and, thanks to a kidney and liver transplant, is recovering from this disease, I know how depressing it can be when faced with a diagnosis of Oxaluria. The folks at OHF do a great job of helping oxaluria patients stay in touch with each and help answer questions about their problem. Through this network we have formed an excellent international support group. They also work closely with doctors and scientists to find a cure.

The Great!

I've personally experienced the results of this organization in...

many ways, but mainly it helped me connect with a young girl recently diagnosed with Oxaluria. I have spoken with her (and others) and let them know not to give up hope, you can get through life with this affliction.

Ways to make it better...

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

none, besides finding a cure!

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What I've enjoyed the most about my experience with this nonprofit is...

getting in touch with other suffering form this affliction.

The kinds of staff and volunteers that I met were...

great group of hardworking folks.

If this organization had 10 million bucks, it could...

find a cure.

Ways to make it better...

none. great group of hardworking folks.

In my opinion, the biggest challenges facing this organization are...

the fact that it is not a well known disease.

One thing I'd also say is that...

this is a great program that would do all the right things to help folks with any donations it receives.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2009

June 25, 2010

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June 25, 2010

I am a new addition to the OHF team and have been completely in awe of the caring and dedicated members who spend a significant amount of their time trying to help raise awareness and fight this disease. Being new, I still have a lot to learn but I have come onboard with previous expertise within the online advertising world and hope to use that knowledge to increase OHF.org's online presense. Currently, I'm working with the director and program manager of the foundation to think of creative ways to leverage OHF's strengths and bring it to the forefront of users who search for diseases and/or related subjects to the organization.

The Great!

I've personally experienced the results of this organization in...

how wonderfully the relatively small team of volunteers work together to generate solid results within their respective communities. I only hope we get more volunteers to come forward and help...this can only bring us closer to our goal!!

Ways to make it better...

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

reach out to new volunteers and try to utilize a variety of strengths. Right now, the organization is, relatively, so small that a few people wear so many hats...it would be great to generate that interest and bring more people onboard that can help.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the heart and tenacity of the group. Watching them in action makes me realize I have the ability and time to help make a difference.

The kinds of staff and volunteers that I met were...

unbelievable. Both in their dedication and in their ability.

If this organization had 10 million bucks, it could...

concur the disease and find a solution!!

Ways to make it better...

it's too early to say that for me. If anything, I just wish there were more staff to take on more projects!!

In my opinion, the biggest challenges facing this organization are...

the limited size of the actual team and definitely due to its rare disease status, it's tough to grow the awareness as much as needed.

One thing I'd also say is that...

I only hope that as I becoming more acclimated to the group, I too can provide insights that will prove beneficial to the organization and those who need help the most.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

The Oxalosis and Hyerpoxaluria Foundation works hard every day to find a cure for this silent and life threatening disease. The families and patients involved are working tirelessly to find better treatments and a cure so that people no longer have to suffer from never-ending kidney stones. The group really works hard at building a community and increasing awareness for PH. Research is the key to finding a cure for this disease and the OHF never stops in this mission.

The Great!

I've personally experienced the results of this organization in...

OHF works because of the dedication of the people involved. They work with scientists, government and doctors to help the patients day in and day out. They are getting results with a few people doing a lot of work.

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What I've enjoyed the most about my experience with this nonprofit is...

meeting the patients and seeing how they are living and thriving while still worrying about the disease that they have. They are inspiring and make me want to work every day.

The kinds of staff and volunteers that I met were...

The families that step up and volunteer are truly exceptional. As a staff member, I strive every day to listen and work diligently to make the OHF a better community. It's the people that make the OHF what it is. Caring and concerned, focused on a cure.

If this organization had 10 million bucks, it could...

FIND A CURE!!!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

Dedicated members who put out great effort to help find a cure for this disease. The Foundation is oriented to helping educate and support patients and their families. Money is raised to support research to cure and treat hyperoxaluria.

The Great!

I've personally experienced the results of this organization in...

supporting research to better understand and treat hyperoxaluria.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

A group of dedicated parents of afflicted children banded together to work with scientists and clinicians to provide a framework for patients and professionals to receive the best care in the world, and to allow innovative research that is leading to a cure. The organization employs highly motivated individuals who are tireless in their pursuit of excellence.

The Great!

I've personally experienced the results of this organization in...

learning how the dedication of parents can be used to advance both the science and the policy of rare diseases that then lead to innovative care and concern for patients.

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What I've enjoyed the most about my experience with this nonprofit is...

the true dedication shown by all.

The kinds of staff and volunteers that I met were...

"regular" folks who have a large heart and the ability to use their brain to support their desires.

If this organization had 10 million bucks, it could...

cure this disease, and relieve much pain and suffering.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

As a parent of a child with Primary Hyperoxaluria, I truly appreciate the support and comfort I get from the OHF. From the very begining the organization helped us to get the best medical care available.In addition, the access to patients and families with the disease provided and invaluable tool from which to learn. Early on it became clear that more research would be needed in order to hopefully find a cure for this disease. Both my husband and I joined the OHF team in hopes that one day our efforts would cure and prevent this disease.

The Great!

I've personally experienced the results of this organization in...

The OHF has become an extended family. They are there anytime a problem arises. Their guidance is invaluable and their access to the best doctors in the field cannot be beat.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 15, 2010

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June 15, 2010

I have been a patient for over 20 years. The work the organization does is outstanding. The doctors and research at the Mayo Clinic is wonderful. Please support this organization.

The Great!

I've personally experienced the results of this organization in...

I am presently in a reserach study.

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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