dupuytrens-org

[dupuytrens-org]

Daniel Kinek just completed a fundraising 100-mile marathon run to raise awareness about Dupuytren disease and support research for a cure. Read about his remarkable story and incredible achievement at Dup.Run. Congratulations, Daniel, and thanks for supporting the Dupuytren Research Group!

[dupuytrens-org]

/*! elementor - v3.23.0 - 15-07-2024 */ .elementor-widget-imagetext-align:center.elementor-widget-image adisplay:inline-block.elementor-widget-image a img[src$=".svg"]width:48px.elementor-widget-image imgvertical-align:middle;display:inline-block Running.   100 Miles.   Uphill.   In the Summer.   At 12,000 Feet.To Raise Awareness About Dupuytren And Help Fund Research For A Cure.Daniel Kinek is an ultramarathon runner. A former collegiate lacrosse player for the University of Michigan, he has been pushing himself to his limits for as long as he can remember. Daniel is running the Leadville 100 mile trail race on August 17, 2024 to raise awareness about Dupuytren Disease and the importance of research for a cure. The Leadville 100 trail run takes place in the rugged terrain of the Rocky Mountains, starting at 10,200 feet above sea level and going as high as 12,600 feet. It's an ultramarathon race. 100 miles. It's a prestigious race. Daniel is one of the lucky contestants to be accepted through the application lottery. It's a grueling race. Less than half of contestants complete it. It's a challenging race. In his run, Daniel will gain over 15,000 vertical feet while facing unpredictable weather, uneven terrain, and other adversities. It's an endurance race. His goal is to finish in less than 30 hours. Daniel is up for the challence. He's been training for this for nearly a year.  This is Daniel's motivation: "This is a physical and personal race for me because Dupuytren affects my family, including my mother and brother. My mom has the debiltating form of Dupuytren. It makes it difficult for her to do ordinary things we take for granted - holding things, cooking, brushing her teeth, shaking someone's hand. My mom's disease affects her hands and her feet. When the disease attacks the feet it is called Ledderhose. Unfortunately, there is no cure at this time. Dupuytren has disabled my mother who is a Registered Nurse and had a fulfilling career. I am hopeful that a cure is found before the same happens to my brother. I don't have any signs of Dupuytren in my hands. I am doing this for my family and other families. Beyond raising money for Dupuytren research, my goal is to help others become aware of how this disease affects people's lives."Daniel's mission and vision are those of the Dupuytren Research Group. Both have a vision of a cure for Dupuytren disease and related conditions. Both embrace a mission to do whatever it takes and as long as it takes to cross the finish line. Daniel is giving his all to help families affected by Dupuytren disease. Follow his lead. Invest in research to cure Dupuytren disease.

[dupuytrens-org]

Running.    100 Miles.    Uphill.    In the Summer.    At 12,000 Feet. Daniel Kinek is an ultramarathon runner. He will run the Leadville 100-mile trail race on August 17, 2024, to raise awareness about Dupuytren Disease. Daniel doesn't have Dupuytren, but his family does. He will be running a difficult 100 miles in less than 36 hours. He's doing this for the good of all families affected by Dupuytren. He's doing this to raise awareness about Dupuytren and help fund Research For A Cure. See Daniel's incredible story at Running For A Dupuytren Cure.

[dupuytrens-org]

/*! elementor - v3.23.0 - 15-07-2024 */ .elementor-widget-imagetext-align:center.elementor-widget-image adisplay:inline-block.elementor-widget-image a img[src$=".svg"]width:48px.elementor-widget-image imgvertical-align:middle;display:inline-block Running.   100 Miles.   Uphill.   In the Summer.   At 12,000 Feet.To Raise Awareness About Dupuytren And Help Fund Research For A Cure.Daniel Kinek is an ultramarathon athlete. A former collegiate lacrosse player for the University of Michigan, he has been pushing himself to his limits for as long as he can remember. Daniel is running the Leadville 100 mile trail race on August 17, 2024 to raise awareness about Dupuytren Disease and the importance of research for a cure.The Leadville 100 trail run takes place in the rugged terrain of the Rocky Mountains, starting at 10,200 feet above sea level and going as high as 12,600 feet. It's an ultramarathon race. 100 miles. It's a prestigious race. Daniel is one of the lucky contestants to be accepted through the application lottery. It's a grueling race. Less than half of contestants complete it. It's a challenging race. In his run, Daniel will gain over 15,000 vertical feet while facing unpredictable weather, uneven terrain, and other adversities. It's an endurance race. His goal is to finish in less than 30 hours. Daniel is up for the challence. He's been training for this for nearly a year.   This is Daniel's motivation: "This is a physical and personal race for me because Dupuytren affects my family, including my mother and brother. My mom has the debiltating form of Dupuytren. It makes it difficult for her to do ordinary things we take for granted - holding things, cooking, brushing her teeth, shaking someone's hand. My mom's disease affects her hands and her feet. When the disease attacks the feet it is called Ledderhose. Unfortunately, there is no cure at this time. Dupuytren has disabled my mother who is a Registered Nurse and had a fulfilling career. I am hopeful that a cure is found before the same happens to my brother. I don't have any signs of Dupuytren in my hands. I am doing this for my family and other families. Beyond raising money for Dupuytren research, my goal is to help others become aware of how this disease affects people's lives."Daniel's mission and vision are those of the Dupuytren Research Group. Both have a vision of a cure for Dupuytren disease and related conditions. Both embrace a mission to do whatever it takes and as long as it takes to cross the finish line. Daniel is giving his all to help families affected by Dupuytren disease. Follow his lead. Invest in research to cure Dupuytren disease.

[dupuytrens-org]

Everyone at the Dupuytren Research Group wishes you a safe, memorable, and Happy New Year! Thanks very much for making our work possible and sharing the journey to a future without Dupuytren disease.

[dupuytrens-org]

What information do we collect?The email address you provide will only be used to send you information and updates.If at any time you would like to unsubscribe from receiving future emails, we include detailed unsubscribe instructions at the bottom of each email. How do we protect your information?We implement a variety of security measures to maintain the safety of your personal information when you enter, submit, or access your personal information. Do we use cookies?No. We do not use cookies. Do we disclose any information to outside parties?No. If we change our privacy policy, we will post those changes on this page. Contacting UsIf you have questions regarding this privacy policy, contact us using the link below.

[dupuytrens-org]

Inheriting Dupuytren is more common than you might think. Take a deep dive into how Dupuytren is passed on to future generations.

[dupuytrens-org]

Happy Dupuytren Day! Guillaume Dupuytren, the famous surgeon, was born on 5 October 1777. He would have been 246 years old today. If he were alive now, there's a good chance he'd have the disease named after himself. Why is it called Dupuytren disease or Dupuytren contracture? Most medical disorders are named in one of three ways. Dupuytren has all three. Many names are eponyms - the name of someone linked to the disease, usually the doctor who first described it. For example, surgeon James Parkinson first described "paralysis agitans", which came to be known as Parkinson disease. Dupuytren described the condition and operated on his patient in front of a live medical audience. He believed it came from mechanical stresses: his patient held horse reins as a coachman. He didn't name it himself, but at the time, he was the most famous surgeon in Europe, so his name stuck. Another way to name conditions is by describing what they look like, often in Latin, so it sounds official. For example, a vesicle is a small blister and a bulla is a large blister. Dupuytren has been described as palmar fascial fibromatosis, contraction of palmar fascia, and similar terms. Lay names are the third source of medical names, usually simple explanations or descriptions. For example, tennis elbow (lateral epicondylitis), athlete's foot (fungal dermatosis), and lockjaw (tetanus). Dupuytren has many lay names, including Viking disease, Celtic hand, and "the curse of the MacCrimmons". In Denmark, it's been called kuskefingre - Danish for "Coachman's finger", from Dupuytren's original theory. Catchy, but medically inaccurate. Dupuytren contracture was described by Felix Plater in 1610, and by others long before Dupuytren's time. Before Dupuytren, it was called "crispatura tendinum" by Boyer, and "permanent retraction of the fingers" by Cooper. Dupuytren won the naming competition. Guillaume Dupuytren's most significant contribution to Dupuytren contracture is not his surgical operation. It's not his theory of what causes it. It's not his description of the anatomy. It's that it became the standard name for this condition. Why is that a big deal? Because a standard name allows doctors and scientists in different countries speaking different languages to collaborate. When you say or write "Dupuytren disease", people know exactly what you're talking about, regardless of location or language. For example, this image is from a 1997 publication in The Journal of the Korean Rheumatism Association: For English speakers, Dupuytren is hard to spell and its pronunciation doesn't make sense. Should we rename it? No!  It's a way for patients to talk about what they are dealing with. It's the rallying cry of those working on a cure, like the Dupuytren Research Group. So even though he had no role in choosing either his birthdate (Happy Birthday!) or his name (Thanks for the eponym!), today is the right day to celebrate both. Happy Dupuytren Day! - Charles Eaton MD

[dupuytrens-org]

While it’s estimated Dupuytren’s disease impacts over 10 million Americans, the current treatment options available to patients – mainly surgical procedures – are inadequate. Medicine has been focused on treating Dupuytren-related finger deformities rather than preventative measures or finding a cure at the biological level. Yet, with increasing recognition of the prevalence and severity of Dupuytren���s, the scientific community seeks to identify what's correlated with the disease in hopes of preventing the onset of symptoms and its recurrence. The conventional teaching is that alcohol is one of the risk factors for Dupuytren’s disease. However, the evidence has been anecdotal, and it’s not enough to demonstrate a clear relationship. There are several reasons for this: for one, a majority of Americans consume alcohol. According to a 2022 Gallup Poll, it’s estimated nearly ⅔ of Americans drink1. Furthermore, Americans often underreport their drinking habits, which would impact the accuracy of a survey. Nevertheless, a recent study2 is the first of its kind to find genetic evidence in support of the correlation between alcohol consumption and Dupuytren’s disease. The research, rather than conducting a survey based on drinking habits, looked at genetic mutations associated with the risk of alcohol addiction. The results found a statistically significant correlation between genes related to alcohol abuse disorder and Dupuytren’s. This doesn’t confirm drinking causes Dupuytren. It suggests genetic risk factors related to alcohol use may increase an individual's likelihood of developing the disease. Like a weather forecast, it’s important to note that genetic risk is only a prediction. For instance, having genes linked to alcohol abuse doesn’t mean an individual is going to develop an alcohol addiction. Genetics just increases the risk. The same logic applies to the prevalence of alcohol abuse genes and the risk of Dupuytren’s: a correlation doesn’t guarantee its incidence. This study is a step in the right direction and raises more questions than it answers. Is it the genes, the effects of the genes on alcohol consumption, or both? It's still not known whether drinking, in addition to the genetic predisposition for alcohol abuse, increases the risk of Dupuytren’s. What if an individual drinks heavily but isn’t genetically predisposed? At what severity of drinking does Dupuytren’s disease become a risk? Is social drinking a risk factor?  Many questions still need answers — this isn’t necessarily a bad thing, it just means there’s work to be done. With the only available options being treatment once diagnosed, it’s clear more research needs to be conducted in terms of disease prevention. The Dupuytren Research Group’s blood biomarker research follows the same line of reasoning – developing tools to test medicines to prevent disease progression and find biological patterns of the disease. This work will grant patients more freedom, allowing individuals concerned about the risk of Dupuytren to take proactive measures to regulate the disease and prevent its recurrence after corrective procedures. It is a crucial step towards developing a Dupuytren cure. References 1 "What Percentage of Americans Drink Alcohol?" https://news.gallup.com/poll/467507/percentage-americans-drink-alcohol.aspx 2 Wang, Z., Wang, Z., Yan, Z. et al. Smoking, alcohol consumption and risk of Dupuytren’s disease: a Mendelian randomization study. BMC Med Genomics 16, 212 (2023). https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-023-01650-4 Kate Micallef Kate is a premed at the University of Michigan. She is pursuing a degree in Biology, Health, and Society.

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/amazonsmile-is-closing-last-chance-to-support-dupuytren-research/

AmazonSmile is Closing: Last Chance to Support Dupuytren Research!

We’re Grateful!

We’re very grateful for the support we have received under the Amazon Smile program, in which a percent of Amazon purchase revenues are donated to the Dupuytren Research Group.

We’re Also Sad.

Sadly, Amazon is withdrawing this program from most of the charities participating in this program – including the Dupuytren Research Group.

Amazon Smile Deadline is February 20.

The AmazonSmile program will close on February 20, 2023. If you’ve been putting off making an Amazon purchase, now is the time to make those purchases and support Dupuytren research.

Use this link to shop on Amazon before February 20: https://smile.amazon.com/ch/26-3886958 and a portion of the purchase proceeds will go to the Dupuytren Research Group.

Thanks for your support over the years through Amazon Smile. It’s frustrating, but I can’t be mad at Amazon – the Amazon Smile program supported Dupuytren research for years.

Charles Eaton MD

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/this-puzzle-needs-y-o-and-u-to-solve/

This Puzzle Needs Y, O, and U to Solve!

Dupuytren disease remains a puzzle, a puzzle with so many clues, but not enough to solve – yet. The Dupuytren Research Group is conducting research to find clues hidden in the blood. Why? A Dupuytren blood test is the single most important tool we need to understand why some people have a mild version and others eventually fail all treatments. It’s the tool we need to take the guesswork out of treatment. To be able to provide truly individualized care. To develop and test preventive treatments far more quickly than we can right now.

The Dupuytren puzzle has many pieces. The most important one is you. Support Dupuytren Research with a charitable gift this Holiday Season. https://CureDup.com

Thanks very much!

Charles Eaton MD

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/reverse-giving-tuesday-a-video-for-you/

Reverse Giving Tuesday: A video for you!

It’s Giving Tuesday, a traditional fundraising push for nonprofits. The Dupuytren Research Group is flipping this to Reverse Giving Tuesday with a gift for you: a new video seminar reviewing Dupuytren disease, its challenges, and the strategy behind our research for a cure. https://www.youtube.com/watch?v=LkOronhIgQU

Of course, your financial support is critical https://CureDup.com, but this time we’re paying it forward to you to start the ball rolling.

Happy Giving Tuesday!

Charles Eaton MD

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/the-most-common-crippling-hand-condition-youve-never-heard-of/

The ‘most common crippling hand condition’ you’ve never heard of

The Washington Post just published an article about Dupuytren disease mentioning the Dupuytren Research Group and two of its directors, Gary Pess MD and Charles Eaton MD.

https://www.washingtonpost.com/wellness/2022/11/20/dupuytrens-crippling-hand-disease-treatments/

Progress toward a Dupuytren cure begins with raising awareness about Dupuytren prevalence and problems. Please share this widely!

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/three-exciting-dupuytren-updates-and-a-public-seminar/

Three Exciting Dupuytren Updates and a Public Seminar

I want to share three exciting Dupuytren updates with you this Halloween.

The first update is the growing use of artificial intelligence (AI) in medical research. The term “Artificial Intelligence” is a little misleading. Today, AI is about computerized pattern-matching rather than thinking and consciousness, but it’s still amazing. The pumpkin pictures above are all AI-generated. I typed “Happy pumpkin with hands”, and Dall-e’s AI made them. I had to try a few times, but still, it’s impressively realistic. The program created these pictures by pattern-matching my text with its image database. Each hand and each pumpkin in each image is unique, and the program could generate a nearly infinite number of new variations.

These images are cute, but the more significant impact of AI will be in developing medicines for Dupuytren. Earlier this year, DeepMind’s AlphaFold AI analyzed the shapes of proteins and predicted about 200 million new protein shapes. This database could not have been made by hand or by trial and error. It’s a giant breakthrough in modeling how proteins work, how they snap together with other molecules like Lego pieces, and how drugs might modify their effects. If we can identify proteins that govern Dupuytren biology, AI like this could match their shapes to the shapes of known drugs and therapeutic molecules. This method is already in use with other diseases – finding new uses for existing medications without trial and error or having to create a new drug.

The second update is the Dupuytren Research Group’s blood biomarker discovery research. Our study has 14 Terabytes of gene-related data on a small group of people with and without Dupuytren. We plan to recruit researchers from around the world to study this data in the cloud through a PrecisionFDA competition https://precision.fda.gov/. This competition will make secure de-identified gene data available to vetted researchers. The competition prize will go to the research team that best identifies which (anonymous) participants have Dupuytren and which don’t – based only on de-identified gene data. This competition will engage researchers from different backgrounds to work on this data, including researchers studying other fibrotic diseases. The more researchers, the more insights, and the faster we make progress. This competition should launch in early 2023.

At the same time, we’re also analyzing blood protein data from the same research participants. We have data from mass spectrometry and SomaLogic analysis of over 7000 blood proteins. We’ll soon also have data from Nordic Biosciences on how actively different collagen types are accumulating and being removed. It’s challenging. Protein profiles can reflect Dupuytren, but so can age, gender, and other factors. The plan is to complete this protein analysis and publish the results next year, followed by a publication of the PrecisionFDA gene findings. There will be more analysis of connections between gene and protein findings for more insights into new Dupuytren drug treatments. This work will pave the way to establish NIH funding for future Dupuytren research. Without government support, we’re still funded entirely by charitable donations.

The third update involves a trip to Boston this November. I’ll attend the Sixth Antifibrotic Drug Development Summit in Woburn, just outside Boston. This conference is for researchers developing new treatments for fibrotic diseases affecting the lungs, liver, kidneys, and other areas. There’s an overlap between these diseases and Dupuytren, so it’s an excellent opportunity to see the forefront of fibrotic research and to network with potential collaborators in other fields. I want to present Dupuytren Research Group’s findings at the next summit.

And… I’m staying an extra day in Woburn to give a free public presentation on Dupuytren disease and research for a cure. This presentation and the following discussion will be from 9:00 – 10:30 AM, Saturday, November 12, at the hotel hosting the AFDD Summit: Crowne Plaza Boston – Woburn, 15 Middlesex Canal Park Road, Woburn, MA 01801, 781-933-0491. Attendance is free, but you must register to attend at https://www.eventbrite.com/e/dupuytren-disease-and-research-for-a-cure-tickets-455259572637. Please come if you can!

We’re making real progress, and I’m personally grateful for the generosity of each person who has made this work possible so far. Of course, we have more to go, but it’s a great start.

Happy Halloween, and thanks again for your support!

Charles Eaton MD

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/register-now-international-dupuytren-symposium/

Register Now: International Dupuytren Symposium!

https://www.youtube.com/watch?v=RKXl7Tp6NHM Geared for healthcare professionals, but anyone may participate! https://DupuytrenSymposium.org

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/happy-july-4th-from-dupuytren-research-group/

Happy July 4th from Dupuytren Research Group

Have a happy, meaningful, and safe Fourth of July celebration today!

-Charlie Eaton

[dupuytrens-org]

New Post has been published on https://dupuytrens.org/petition-the-nih-to-fund-dupuytren-research/

Petition the NIH to Fund Dupuytren Research

If you are affected by Dupuytren disease, you know Dupuytren isn’t going away by itself. We must work together for a future without Dupuytren disease. Right now, there is no US federal Dupuytren-specific research funding. Help change this now!

Sign this petition to tell the National Institutes of Health Dupuytren Research Funding Matters!

https://www.ipetitions.com/petition/we-support-the-need-for-dupuytren-disease-research