Save Jon Blog

     

A Family Affair:  Father Fights for Young Son with PSC

SAVE JON / 16.2015 / Uncategorized / Leave comments

 At SAVE JON, we’re all about collaboration. We know that by working closely with strategic partners we’ll be able to cure PSC much more quickly than we ever could on our own.  And since our approach is a scientific one, it makes sense that we usually form those types of relationships with other scientific organizations.  But occasionally, an opportunity appears in an unexpected place – sometimes even in a completely unexpected place.

Like on a bag of potato chips.

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How Scarce Expertise Can Be Leveraged for PSC and Other Rare Diseases

SAVE JON / 13.2015 / Uncategorized / Leave comments

If you follow our blog regularly, you probably know that we are launching a twin network (PSC America/PSC America Peds) for PSC patients, relatives, care givers, researchers and physicians to share information about PSC.  Building a network to bring people with different expertise together to solve a rare and complex problem seems like such a simple solution.  It is hard to believe that it is not standard practice already.  Thankfully, recognition of this simple solution is growing globally.  Today, we would like to share with you how other networks are emerging to speed progress in medical research and care.

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PSC and IgG4: What Do We Need to Know?

SAVE JON / 06.2015 / Uncategorized / Leave comments

PSC patients may have heard of IgG4 before, but many may have not.  This protein could be an important clue to explore in PSC research, and may be important for patients to discuss with their physicians. In today’s blog post we explain why.

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PSC Research has Strength in Numbers: What We can learn from Ebola

SAVE JON / 30.2015 / Leave comments

Did you know that some survivors of the latest Ebola outbreak are suffering from new health issues?  Do you know what’s being done in response?  Here at the SAVE JON office we have been reading with interest the latest stories following the aftermath of the Ebola crisis.  This is a biomedical story that patients and researchers concerned about many different diseases can learn from, including PSC patients and those involved in PSC research.

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Liver Awareness Month: When Pink is Seen Also Remember Green

SAVE JON / 27.2015 / Leave comments

As is the goal, most of you are probably aware that October is Breast Cancer awareness month.  Up and down the country people do a great job of flying the pink ribbon representing breast cancer and incorporating pink into attire and promotional materials.  The huge effort to raise money and awareness for this devastating disease each October is admirable.  The Pittsburgh Steelers and other NFL teams now even wear various items in pink during October home games (pictured).  Unfortunately, we have more devastating diseases in this world than we do months of the year and colors.  That’s why as October draws to a close we want to remind you of two things: First, for those struggling with or affected by a life-threatening disease, the battle continues beyond one month of the year.  Second, each month diseases just as worthy of attention go unnoticed.  Did you know that October is also Liver Awareness month?

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PSC and Bile Duct Cancer: Why Monitoring of PSC Patients is So Important

SAVE JON / 23.2015 / Leave comments

Compared to the general population, PSC patients have a 400-fold increased risk of developing bile duct cancer. This cancer, also known as cholangiocarcinoma (CCA), is the most dreaded complication of PSC because it is so aggressive. CCA progresses quickly, is difficult to treat, and can eliminate a patient’s eligibility for a liver transplant. The rapid deterioration that can follow a CCA diagnosis has been tragically exemplified in the past with famous PSC patients such as Walter Payton and Chris LeDoux, who both lost their lives to CCA just months after diagnosis. What can we do now to prevent this happening to more PSC patients?

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SAVE JON, Mike Ditka Raise Funds for PSC Research and Honor the Legacy of Walter Payton

SAVE JON / 16.2015 / Leave comments

We at SAVE JON are pleased to share with our community that with your help and support we pulled in over $400,000 in pledges and sponsorships through our inaugural Game Changer Gala held on October 7th at Chicago’s Union Station! These funds will help support research and operations geared towards meeting SAVE JON’s goal of delivering therapies and an early diagnostic test for primary sclerosing cholangitis (PSC) in five year’s time.

 

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Sports Stars to Focus National Attention on PSC in Chicago

SAVE JON / 21.2015 / Uncategorized / Leave comments

If you have been following our social channels recently, you may have heard about “Game Changer 2015”.  We are excited to announce this upcoming event, which will be held in Chicago’s Union Station on October 7th.  SAVE JON board member and former Chicago Bears Coach Mike Ditka will host Game Changer 2015 in honor of NFL legend Walter Payton.  Payton died from bile duct cancer associated with PSC over 15 years ago, but many people don’t know that the cause of Payton’s illness was PSC.  Meanwhile, prognosis and treatments for PSC patients have remained largely the same in the years that have passed since Payton’s tragic death.  This is despite the fact that there are as many people living with PSC as there are people living with Cystic Fibrosis or ALS, and PSC appears to be on the rise. We at SAVE JON are working alongside many others to make sure PSC is better known and adequate funding is channeled into the the kind of large-scale strategic research that can really tackle this disease.  Game Changer 2015 will kick off an offensive by the band of brothers who have raised their hand and suited up to champion this cause in honor of their fallen friend and teammate.

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Mike Ditka Remembers Walter Payton’s Battle with PSC

SAVE JON / 14.2015 / Leave comments

Football season is fast approaching, and things are ramping up here at SAVE JON, Inc. Coach Mike Ditka has been helping to push our offensive forward as we change the game against PSC. In our latest video, coach Ditka remembers the shocking impact PSC had on legendary Chicago Bears running back Walter Payton, and explains why a team-based approach to building cures is so important for ending the disease that so tragically took Payton down. Learn more about the Walter Payton PSC story here:

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PSC and the Microbiome: Scientists Follow Their Gut Feeling

SAVE JON / 31.2015 / Leave comments

Perhaps you look at the stars at night and the sheer size of the universe completely blows your mind. You are just one human on this tiny planet. Meanwhile, to other life forms, you are their planet. Your body is host to numerous microbial communities, to the point where 90% of the cells you carry around are not your own – they are bacteria, plus there are viruses and other micro-organisms. Collectively, all of the microbes resident in a human body are known as the microbiota. The variability in the microbiota from one person to the next puts the human genome to shame. Here, we highlight what exploration of this new frontier means for PSC patients.                                     

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