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September 13, 2012

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September 13, 2012

I was diagnosed with PSC in March 2012. My GI doc told me I had the disease, said there wasn't anything he could do to help me but he would try to follow up with me and sent me on my way. With a million questions in my mind, I searched the Internet and fount PSC Partners Seeking a Cure. My first post was answered in hours by two very knowledgable fellow PSCers who made me feel welcome and helped me feel not quite so lost in this new world. Without this organization I would still be floundering in acronyms, untruths and fear. I am still looking for a doctor but will have to travel to even find a hepatologist. As of now, I still haven't met anyone who knows of this disease or that has it so I am really looking forward to attending one of their conferences. PSC Partners is a daily stop for me in Facebook. I feel like I have a home there where everyone knows my disease. :) I can't imagine how I would feel if I hadn't found this organization. One of these days I will meet the faces behind the names and I know they will be instant friends.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

September 13, 2012
1 person found this review helpful

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September 13, 2012
1 person found this review helpful

When I was first diagnosed with PSC, I felt all alone in the world. I had a rare disease that very few of my doctors had even heard about, let alone seen. It was scary and some of the information out there on the web just made things worse. Then, I found PSC Partners Seeking a Cure and things started to turn around. Along with a great catalog of information, here were real, live people I could communicate with, ask questions of, and relate to. We share ideas, treatments, and frustrations. We discuss the newest findings in the field and we share what does and doesn't work for us, and our loved ones. I still have PSC, but it doesn't have me. Thanks to PSC Partners Seeking a Cure, I no longer feel isolated and I've gained a level of confidence that I, like others, can live with this disease rather than just die from it. PSC Partners has been invaluable in providing information, funding (desperately-needed) research, promoting organ donation and tirelessly finding ways to not only educate and bring awareness to medical professionals and the public, but also to you and me. PSC Partners has taken a world full of people just like me, scared and alone, without answers, and they've formed us into a community, a family, that is there for one another sharing news, stories, and our lives with PSC. One day, hopefully not too far away, some of the puzzle pieces of PSC will click into place. And when it does, there is no doubt in my mind that PSC Partners played a pivotal, monumental role. I want to live. I want my friends to live. I want that day to come when PSC isn't scary and big and without answers. Please, if you can help, help. And to PSC Partners, thank you for all you've done and continue to do. Thank you for giving me the power to fight for my own life and the lives of those I love.

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?

Life-changing

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

September 13, 2012

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September 13, 2012

Five years ago, I didn’t know where to turn to. There was no resource available for PSC where I lived and no support whatsoever. I looked online to find help and found PSC Partners. I wrote to the contact person, the founder of the organization, and received several personal, warm, information-packed messages from her. Those made me feel the presence of a vibrant, proactive and unified community I was eager to explore and be part of. The first of five annual conferences I attended took place at the Mayo Clinic in Jacksonville. I couldn’t believe the magic that was in the air during the three-day long event. PSC patients, doctors, researchers, caregivers intermingled, excited to be sharing the same mission. That weekend, the discovery that this community would become my family, that I HAD to be a part of this incredible energy, had a life-changing impact on me. And since then, through the years, my PSC family has grown, and so have my roots and my involvement in this committed and amazing group. Eight years, eight conferences in important medical centers throughout the US, a widening circle of PSC families and medical thought leaders, and still, PSC Partners continues to be a close family while it spreads its magic. That PSC Partners, representing an obscure rare disease, could move PSC research forward, could give support to so many, and could build such a strong network is a beautiful example of the power of the human spirit, seen at its very best. For these reasons, I wholeheartedly support PSC Partners, its mission and its vision in every way I can.

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?

Life-changing

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

September 12, 2012

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September 12, 2012

I learned of PSC Partners Seeking a Cure through my son, who has PSC. Because of his involvement, I have learned more about the organization and have assisted in some fund-raising. I am especially impressed with the high level of integrity within the organization and the focus on using volunteers so most of the money contributed can go to research and education, as well as support for patients, families and caregivers. I have attended two of the national events sponsored by this organization - - in California and in Minnesota - - and each was inspiring and educational. The organization has grown quickly and is reaching out in new and innovative ways.

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Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

September 12, 2012
3 people found this review helpful

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September 12, 2012
3 people found this review helpful

I learned of PSC Partners just a few years ago and was warmly welcomed by this wonderful group of people. I'm a long-term patient with PSC and now I'm a volunteer for the organization. I am simply amazed at the achievements of this organization. They are drawing very meaningful attention to this rare, poorly understood disease so that the scientific community is competing to develop high quality research programs that will benefit not only patients with this disease, but many others with related illnesses. They combine scientifically well informed research funding initiative with high quality education and support for patients, caregivers, and healthcare providers trying to understand this unpredictable illness. The leadership is superb and its nearly all volunteer staff ensures that a very high percentage of the funds raised go directly to support the organizations mission! I plan on being involved for the rest of my life and hope to attend every one of its annual conventions.

The Great!

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

a better understanding of the disease and its effects on patients' lives. A better understanding of the scientific research process. Improved ability to understand information available online about health and PSC specifically. Improved ability to communicate with my healthcare team.

Ways to make it better...

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

I would very much like to see the organization find nontraditional ways to reach people diagnosed with PSC who don't seek support. We especially need to reach out to those with inadequate healthcare, those less familiar with the healthcare community, and minorities. Many efforts are made to reach out to these individuals yet those involved online are more homogeneous and more highly educated than the general population. This is not a problem unique to this organization.

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?

Life-changing

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

What one change could this group make that would improve your volunteer experience?

I'm not sure how to answer this. I feel warmly welcomed by the organization and encouraged to participate as little or as much as I would like and am able.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Very much. In particular, I've vastly expanded my network of friends with this and similar healthcare issues.

How did this volunteer experience make you feel?

Like I am truly making a difference.

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