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PSC Partners Seeking A Cure

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Nonprofit Overview

Causes: Health

Mission: The mission of the PSC Partners Seeking a Cure (PSCP), a 501 (c) (3) organization, is to provide education and support to primary sclerosing cholangitis (PSC) patients, families and caregivers and to raise funds to research causes, treatments and potential cures for PSC. Members of the PSCP Scientific/Medical Advisory Committee are actively engaged in deciding where to allocate our funds for PSC research. Through this competitive program, PSCP has awarded over 3 million dollars to fund research grants to prominent PSC researchers. In 2014, the organization launched the PSC Partners patient registry. The goal of the registry is to collect de-identified (anonymous) information on patients diagnosed with primary sclerosing cholangitis in order to increase and accelerate research, enable clinical and drug trials, and find effective treatments for PSC. PSC is a poorly understood disease for which there are currently no effective therapies and no known cure.

Programs: Provide education and support to primary sclerosing cholangitis (psc) patients and their families through website and our annual conference for patients and caregivers. To raise funds and support research to find the cause, better treatments and a cure for psc. All grants awarded by our scientific/medical advisory committee pursue these efforts.

Community Stories

63 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

My son had PSC and PSC Partners were a huge help with information, support and love. I don’t know what we would have done without them. They all family now.
PSC Partners Seeking a Cure is the best run nonprofit with a small staff and incredible volunteers so monies raised can go to much-needed research. They are tireless advocates working to find a cure.

Meghan B.2

General Member of the Public

Rating: 5

My family found this nonprofit just a month after our 12 year old son was diagnosed with PSC. We were lost, terrified, and lacking in a working knowledge of the disease and a support system for our journey with it. We gained knowledge, support, and a balance to our fears through this organization, its leader & members, and the conference held just 2 months later... which we flew out to attend. The conferences are phenomenal. The people behind this organization give their hearts to it and to all who are helped by it.

Donor

Rating: 5

My daughter was diagnosed with PSC in 2009 when she was just 18 years old. She was hesitant to come to the 2009 conference. As we were leaving she made a statement (not a question) that we were coming back the next year. And we have been back each year. She and I and my spouse, found friends and support as well as incredible information and hope from the members, presenters, organizers, volunteers, etc.

TL B.

Client Served

Rating: 5

I have PSC and this team of wonderful people help me to understand everything about it

Michelle F.5

Client Served

Rating: 5

Immense support and information helped me navigate through such a rare disease. The difference PSC partners made in my life is immeasurable.

Lynann C.

General Member of the Public

Rating: 5

I was diagnosed with PSC in 2014 the website provided me with helpful information and links. Being knowledgeable really helps in conversations with my doctor. It is a great tool for patients and caregivers.

Previous Stories
1

General Member of the Public

Rating: 5

This organization and the facebook group has helped me cope, understand, and survive this dreaded disease.

Kathy S.5

General Member of the Public

Rating: 5

I had no idea where to turn when diagnosed 9 years ago. Terrified and hopeless, members immediately tried to calm my mind with personal stories and real statistics and facts about PSC. I will forever be a member of the PSC family.

Donor

Rating: 5

This organization has been wonderful from the start. They accepted us when my son got diagnosed. We have gained a huge family!!! Thanks a million!
Love you all!

Client Served

Rating: 5

A wonderful source of advice and support which has helped me through some very difficult times with a PSC. They work tirelessly in disseminating research results, raising money for new research and building a supportive and well informed community.

Client Served

Rating: 5

When I was first diagnosed with PSC, I didn’t know what to do, how to feel, where to turn. Luckily, I had an amazing HCP who referred me. PSC Partners Seeking a Cure has been a godsend! The wealth of information is amazing. Anytime, I have questions about my disease, I’m able to go line and research and will usually find the answer or see where someone else has asked a similar question and received multiple responses!

Client Served

Rating: 5

PSC Partners has provided me with information, education and comfort on my PSC journey. They are an extremely compassionate and hard working team and put the needs of their members first and foremost.
They strive towards advancement in research for a treatment and ultimately a cure. They travel the world to bring awareness about this difficult disease.

Linda105

Volunteer

Rating: 5

PSC Partners is 100% about helping their members whether they are fellow PSCers pr caregivers. Without this nonprofit, I would still feel alone with my diagnosis and unsure of what I should do. They put on a yearly conference that is simply amazing! The people who attend their annual conference almost always return annually. Love PSC Partners and their staff who care deeply about all of us.

Previous Stories
3

Client Served

Rating: 5

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.

Donor

Rating: 5

The people who run this nonprofit leave no room for doubt. They raise money to fight Primary Sclerosing Cholangitis and collect and disseminate information about it from and to patients, doctors, and researchers. It is a very lean organization with a narrow focus and has been effective, using the money they raise to kick-start research on various aspects of the disease.

General Member of the Public

Rating: 5

Wonderful place for information and to feel part of a community. Our son was diagnosed at age 7 and we’ve learned so much from this group. Hoping for a cure

1 Kenneth H.1

Donor

Rating: 5

Outstanding group of very informed and caring individuals making a huge difference for this rare disease. Highly recommend.

General Member of the Public

Rating: 5

My husband was recently diagnosed with PSC, and PSC Partners Seeking a Cure has been a wonderful place to get accurate information and support!

1 Dave R.6

General Member of the Public

Rating: 5

The first place we were able to find any in depth explanation of PSC once our daughter was diagnosed. Then it became clear that this organization was much more than an information group. It is a support group for those living with PSC and their caregivers. It has become the guide for all things that surround the illness for all those affected. Research, information, funding, conferences bringing the world foremost experts in the field from around the world. A sense of belonging, a sense of hope, a sense of true organizational leadership. We are in Canada and have felt, witnessed and been part of, the overwhelming support for anyone suffering from this rare disease by this single organization. We are forever grateful and humbled by the generosity of its members. Can not say enough but we will try! Thank you PSC Seeking Cure both US and Canada for making this journey with us and for being there in every way possible. A cure is coming!

1

General Member of the Public

Rating: 5

PSC Partners is an unbelievable organization that helped me connect with other PSCers and is doing great things to advance research to find a cure for this liver disease. It's so great to know I'm not alone in this journey.

1

Client Served

Rating: 5

When my son was diagnosed with PSC last year, I wanted to find as much information as possible. PSC Partners has been a wealth of up to date information. Their website, facebook page, yearly conference, commitment to research, podcasts/blogs, and newsletter have given me much needed guidance for what is a rare currently non curable disease. I was also through their organization able to be paired with a mentor who has given me guidance and encouragement when I was feeling very overwhelmed. Thank you PSC Partners for all that you do!

1

Donor

Rating: 5

When my husband was first diagnosed with PSC, there was very little information out there. PSC Partners' website gave us clear, concise information. Through their yearly conventions, we connected with others with PSC and gained, not only a support group, but new friends. Friends who understand the disease and life with the disease.

1

General Member of the Public

Rating: 5

I became involved with PSC Partners 7 years ago when I attended their very informative annual conference. I then raised money by running a half marathon and asking for donations. With PSC Partners, I feel confident that my efforts result directly in additional funding for promising research projects to find cures.

1

General Member of the Public

Rating: 5

PSC Partners Seeking a Cure has done a great of job of raising awareness for my son's rare liver disease. It is also a great place for me to learn and get more knowledge.

1

General Member of the Public

Rating: 5

Having been an RN for 15 years before PSC diagnosis, I had never heard of PSC. Thankfully, PSC Partners was there with information and fellowship. So much that is found on line for this disease looks like a death sentence. And no one you know when your diagnosed has this illness. The conferences and connections made, along with a wealth of information that the website provides, helps to save your sanity. I can't thank PSC Partners enough for what they have provided me and my family.

1 Virginia S.1

Client Served

Rating: 5

They are the most encouraging, helpful and loving people in my life. I thank God for all the ongoing support I receive from them.

1

Board Member

Rating: 5

I don’t think I could have gotten through the past 14 years without PSC Partners. From the moment I attended their first conference I knew I would always be a part of them and support them in any way possible.

1 Danielle P.3

Client Served

Rating: 5

I've been connected with others who understand my situation and that takes some of the fear away.

1

Client Served

Rating: 5

When I was first diagnosed with PSC, this nonprofit really helped me learn about the disease, answered many questions, and gave me an idea of what I should be doing to stay healthy as long as I could. It was, and is, an invaluable resource to my friends and family by providing lots of information of all sorts- from how to be an effective advocate, to how to deal with the stress of caregiving, and how to maintain a sense of calm and hope when confronted by a devastating diagnosis. My husband and I have gone to several of the PSC conferences, and were overwhelmed by the comraderie, kindness, and information presented. In addition, I participate in the online closed Facebook group, which is a great source of information and personal stories. I was inspired to participate in two clinical trials because of PSC Partners, and their unwavering commitment to finding a cure has been awe-inspiring. BecUse of them, we now have a patient registry, a code just for PSC, and the attention of providers across the country, including one of my own doctors who mentioned not long ago how impressive they were as a group at a conference he had attended. In almost 12 years of illness I have watched PSC Partners become an excellent example of what a focused, determined non-profit can achieve and I am grateful every day for their hard work and support for patients and families....”whatever it takes”.

1

Client Served

Rating: 5

PSC Partners is an excellent group. They are highly professional and provide only accurate, well researched and documented information. The staff are intelligent and, importantly, caring. Most have had their lives touched by PSC, through a loved one or in some cases through themselves. I've been exposed to a variety of non-profits at both a national and local level, and PSC Partners are truly top-notch. Not only do they help patients and support family members of those with the disease, educating and providing excellent resources so people can understand this disease and get proper treatment, they help further research into its cure and best treatment options. It's not easy to have a very serious disease, much less a rare one, and the fact that PSC Partners, such a great organization and resource, exists makes the journey of having this disease so much better.

1

Volunteer

Rating: 5

I was diagnosed with PSC in 2001 and got a liver transplant in 2013. PSC Partners Seeking A Cure was with me throughout it all. They gave me information that I couldn't find anywhere else. Also I was able to meet so many other people who also have this dreadful disease.

1 Abbie B.

General Member of the Public

Rating: 5

PSC Partners Seeking A Cure was a safe place for me to turn to after my diagnosis when I was just 18 years old. I had never heard of PSC but after one Facebook search I found the PSC community that would later become my family. PSC Partners Seeking A Cure is an organization that fights to bring people together and to find a cure for PSC.

1

Client Served

Rating: 5

This has been a godsend for me being newly diagnosed.

1

General Member of the Public

Rating: 5

They provide so much valuable information and resources for people diagnosed with PSC and more importantly PSC caregivers. The conferences are exceptionally done and so beneficial. The Facebook page is a wonderful place for people to ask questions, get answers, and post in a safe place about this frustrating and awful disease.

1

Donor

Rating: 5

PSC is a very rare disease, effecting less than 1 in 100,000 individuals. As such, it receives minimal attention from researchers and drug companies. PSC Partners Seeking a Cure supports those afflicted with PSC and their caregivers. It also plays an important role in creating awareness, educating the public and funding research to find a cure from this devastating disease.

1

Donor

Rating: 5

PSC Partners is a wonderful nonprofit which educates and supports not only the people suffering from this horrible disease but also their families and friends. Besides raising public awareness, PSC Partners raises money for research in the field. As is the case in most rare diseases, PSC research depends heavily on private donations and fundraisers. The staff of PSC Partners is an amazing and dedicated group of people most of whom donate their time, energy, and expertise to support others and help them learn about the disease and how to best navigate the medical system to deal with their illness. The annual PSC Partners Conference features experts in their field to educate and advocate for all those suffering from this terrible disease. It is the most organized and helpful conference I have ever attended. PSC Partners is the perfect example of what a nonprofit should be.

1

General Member of the Public

Rating: 5

I am a fellow PSC Patient whose really declinced since 2014 since having reoccurring cholangitis 2/3 of each yeat since 2016 after developing an ESBL rare resistant gram neg super bacteria in my livers bile ducts.They have kept me educated, have taught me to advocate and are another family to me who has helped me through the worst of times. Without them, I cant say Id still be here. I know I wouldnt.

Client Served

Rating: 5

Just amazing! So effective & helpful! They are a saving grace for us PSCers - giving is community, information, and hope.

Client Served

Rating: 5

Amazing support group, we all become family. I joined in 2008 and was transplanted in 2012 and I'm still here to support others because i believe in this organization's focus and dedication to a cure. Patients united in a patient focused registry.

General Member of the Public

Rating: 5

I joined as someone having PSC, I'm glad I joined, as the information they have is very interesting and the amount of people it affects is amazing!it's good to have a place to talk to others about PSC. I hope they find a cure one day, cause transplants are not fun.

Client Served

Rating: 5

When we found out ,y husband has Psc, they gave us information, hope and a place to call home

Client Served

Rating: 5

They have helped me deal with such a terrible diagnosis. I have been able to get the help I needed, and I am now on my way to reversing the disease! I could not have done that without them!

Client Served

Rating: 5

The information and support that PSC patients, their families, and friends receive from this non profit is amazing! There is no shortage of support or information given by this group. It's nice to know there is always somewhere to turn to when you think you are alone in this fight for your life.

1

Volunteer

Rating: 5

I have a rare liver disease and by chance I found PSC Partners while searching on line. They hold a conference every year and I decided to attend with my husband. This group is truly amazing! With the exception of a couple paid employees, this group is run by volunteers.

The people that run this group are amazing. After my first conference I suddenly became a part of it. It is because of this group that I have been a mentor to others who are attending their first conference, I have helped to run their gift shop, I belong to 2 on line Facebook groups that are a platform for anyone who has questions or wants to share their experience with this awful disease. I have joined a patient registry, volunteered and been involved with events around where I live. I have been interviewed for a podcast about this disease, made my own video about my experience to raise awareness. These are all things I would not have done without PSC Partners, their support and encouragement.

As a group they have accomplished so much from creating an anonymous patient registry where researchers can gather data to help find treatments, created a medical ID code so that our disease can be identified on its own as opposed to being lumped into other liver diseases, funded numerous research grants, created a Canadian branch of the organization, the list goes on.

Without this group I would be alone and have many unanswered questions. This group is family and they love and support each other and this gives me hope for my future.

1

Client Served

Rating: 5

My son was diagnosed with PSC a couple of years ago and was transplanted earlier this year. PSC Partners has provided immeasurable support throughout this ordeal. A great group of people and organization.

1

Client Served

Rating: 5

PSC Partners is an amazing organization and has helped my family and I in so many ways! I have gone to 9 conferences and have learned so much about PSC and being post transplant and the risks of PSC returning. I have gained a family through PSC and the support that I have received has blessed me. I highly recommend PSC Partners and the annual conference to everyone! PSC Partners is definitely worth more than 5 starts.

1 MarLena Shari W.

Client Served

Rating: 5

Since being diagnosed with PSC (a rare auto immune disease which attacks the bile ducts in the liver) three years ago, PSC Partners has become a part of my family. I know I can turn to them with questions or the need for support and the members are there! Research into the causes and (hopefully one day ) to find a cure are funded through this non-profit group. We need to find a cure!

1

Volunteer

Rating: 5

My life would be filled with anxiety, depression and hopelessness if it was not for PSC Partners Seeking a Cure. I have met so many wonderful people, learned so much about my disease and symptoms, feel hope due to PSC Partners Seeking a Cure's fund raising and research supporting grants and have become part of a community of other PSCr's and caregivers that support one another each and every day. If you have PSC, and I hope you don't, you should be part of this organization. If you have PSC you should take part in our patient registry which will help speed up drug studies, quickening our time to a viable medicine to slow or even halt our disease. Without PSC Partners, this registry would not exist. I have been to all but one of our conferences and come away with renewed hope and a commitment to my PSC friends to be there for them.

1

Client Served

Rating: 5

When my son was diagnosed with PSC I was devastated. PSC Partners was there with information, and encouragement.

1

Volunteer

Rating: 5

My husband was diagnosed over 5 years ago with this rare disease. PSC Partners has been more than a great organization, they are family. The endless amount of work they put into finding a cure is more than amazing! The conference each year comes and goes too fast! They put together such an informative platform and spread such a wealth of knowledge of this horrible disease.

Sandy E.1

Client Served

Rating: 5

My daughter was diagnosed with PSC in 1998 when she was 16 years old. She was seen at Riley Hospital for Children in Indianapolis until she was 18, then by a local gastroenterologist for the next 5 years. Although she was not having symptoms from the PSC, we took her to the Mayo Clinic in Rochester, MN for a work-up. There she saw Dr. Lindor and Andrea Gossard, NP. She is now seen at the Cleveland Clinic. I give this history of the places where she was treated to say that she got very, very good care. We learned a lot. However, until my daughter & her husband and then her father and I were put in touch with PSC Partners Seeking a Cure, our education and support outside of a medical facility was pretty much zero. Now, we have been to 2 conferences on PSC where we have learned what the latest research is, we have met others fighting the same battles, and have a supportive community that we can reach out to if we need them. I can not say enough positive things about this group of people.

1 mpvGN

Client Served

Rating: 5

This organization is truly a lifesaver for those affected by the rare disease primary sclerosing cholangitis. From support, to education, to funding for research and advocacy, this is an impactful organization.

1

Board Member

Rating: 5

This organization and the work they are doing has been such a blessing to my family. Navigating the world of rare diseases is a tough one and not for the faint of heart. This organization takes that challenge head on and strives to support the community of people who suffer from this disease. They are striving to find a cure for PSC and have been successful in achieving worldwide recognition for the work they are doing. I could not be happier to give my full support!

1

Volunteer

Rating: 5

PSC Partners Seeking a Cure (PSCP) serves as a voice for those impacted by primary sclerosing cholangitis (PSC). PSC is a rare liver disease unfamiliar to many medical practitioners. There is no known cause, effective treatment or cure for PSC. Among those impacted are persons with the disease, their family, caregivers and others. Historically, there was little viable information. Into this void, the non-profit entity PSC Partners Seeking a Cure (PSCP) was established (2005). PSCP has made, and continues to make significant contributions in a multi-faceted manner. Three examples are offered.

A main focus is to provide education and support services to those affected. Support groups were established – open and closed – and today these now have more than 5,000 participants. Our daughter Sandi once described PSC Partners as taking “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.”

A second example is raising research funds for, and awareness of, this insidious disease. Since the 2009 inception of its grants program, PSCP has awarded over $3 million dollars. But it is more than the grant funds. PSC Partners has been, and continues to be a voice to inform researchers of the conditions that adversely affect those with PSC, and the desire to find effective treatments for those conditions. One example is to address the uncontrollable itching that has been described as having fire ants in your blood. To help the research process, PSC Partners, in collaboration with the NIH Office of Rare Disease Research (ORDR), established a PSC Partners Patient Registry. The Registry stores information about those affected by this disease, including such areas as family history, quality of life, and patient demographics. Because primary sclerosing cholangitis is a rare disease, the registry serves as a method to track disease progression and to allow the opportunity for patient participation in research endeavors.

A third example is the annual PSC Partners annual conferences, held in conjunction with a major medical center. The conference has multiple functions – it allows patient and caregiver interactions, and can serve as the first time one person with PSC (or caregiver) has met another person with PSC (or caregiver). It also provides both formal and informal opportunity for information sharing between and among researchers and those affected.

Although my daughter did not survive, my family and I are forever grateful for the role PSC Partners had in our dealing with this disease. It allows us, and continues to allow others, to realize that we are not alone, and as PSC Partners says, and consistently shows, “together in the fight, whatever it takes.”

1

Board Member

Rating: 5

I learned about PSC Partners Seeking a Cure (PSCP) from an internet search in 2009, and a few months later attended their 5th annual patient conference in Chicago. As a rare disease patient I was completely unprepared for the welcome I received and the unforgettable experience of meeting so many other patients, caregivers, and medical professionals throughout that amazing weekend. In the years since I have learned about and worked with the incredible individuals behind the scenes and their ongoing focus on education, support, and research to benefit those affected by primary sclerosing cholangitis. I am proud to be a part of this dedicated group of volunteers and staff and humbled to have been elected to a leadership role in the organization. As our group has expanded and opportunities grown we have never lost focus on the community we support (PSCers as we like to call ourselves) and the struggles they face with this life altering disease.

Kind regards,
Fred Sabernick

1

Volunteer

Rating: 5

This group has been instrumental in providing support for my family member with PSC as well as for the whole family. The group functions now as an extended family and has provided guidance regarding medical issues, supporting research, lifestyle needs, and management strategies for dealing with the disease on a daily basis. The people within the group have been accessible all year and have worked very hard at providing a wonderful, informative yearly event for patients and family members alike. Their hard work has most definitely enhanced the research into this disease and hope for a cure in the future.

1 Joanne H.1

Volunteer

Rating: 5

My son was diagnosed with PSC (Primary Sclerosing Cholangitis) and Ulcerative Colitis in 2005. As I was struggling with my 15 year old having these two serious illnesses, my husband found PSC Partners on-line. Their annual conference was two weeks away. I immediately registered and it was one of the best things I have ever done. I traveled 3,000 miles to attend this conference, entering as an anxious mother and leaving with excellent information given by medical specialists dealing with both of these illnesses and having the support and newly formed friendships of PSC patients, caregivers and families who attended the conference. I left feeling like I had met my second family.

I began volunteering with PSC Partners about a year later and continue to love volunteering for this wonderful organization. The goals of PSC Partners are to provide support to patients and caregivers, to educate about PSC including the PSC Annual Conference, and to promote and fund research for this chronic, progressive illness which has no treatments and no cure.

The support PSC Partners provides through the on-line support groups, the mentor/mentee program, and individual support is amazing and has participants from around the world. The annual conference occurs at a university setting with world class hepatologists and other physicians and medical providers. For the last six years I have had the privilege of coordinating volunteers for our annual conferences. These dedicated PSC volunteers include patients, caregivers, family and friends who help make the annual conference meaningful to both new and returning attendees, all the while fostering a caring, family atmosphere.

Two other key aspects of PSC Partners are linked by the need for more PSC research. Since this illness has no cure, the need for research is of vital importance. PSC Partners promotes research and has an excellent scientific medical advisory committee. Fundraising for research is a key goal and PSC Partners has an active grant-funding program. It is so exciting to see the growth of PSC research!

The PSC Partners Patient Registry is a patient-driven registry to collect data about PSC and how the disease affects individuals. The confidential, private data can be used for research and clinical trials to help find treatments and a cure for PSC. As more PSC patients join the registry, the registry becomes more and more important to researchers.

PSC Partners is an important part of my families life. It is a great organization which I highly recommend and support.

1

Client Served

Rating: 5

PSC Partners is the backbone of our PSC family. Because of them, I have connected with hundreds of other PSCers and family members who share the same struggles. They push life saving research forward and give me hope everyday that we will find a cure.

1

Client Served

Rating: 5

This non-profit works extremely hard for PSC patients. They are constantly bringing awareness of this rare disease to patients, healthcare providers, pharmaceutical companies and the general public. They provide research grants every year to pursue treatments and a cure. Their annual conference provides patients and caregivers with educational information and support. I know the support they have provided me is immeasurable.

4 Sandi P.

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2

Donor

Rating: 5

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.

5 Philip B.

Volunteer

Rating: 5

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.