Scheuermann's Disease

Happy Independence Day!

Excellent series of articles on ROBOTIC SPINE SURGERY. Very thorough explanation.

What You Need to Know About Robotic Spine Surgery Learn the common applications of robotic technology in spine surgeries with our comprehensive guide authored by an industry expert.

Today is FLAG DAY!
Thankful each day to live in America, and for the brave men and women in our Armed Forces who allow us to remain free.

What an HONOR! 👏👏The Scheuermann’s Disease Fund has been invited to participate in the INTERNATIONAL SPINE STUDY GROUP (www.ISSGF.org) 2024 annual meeting in August. ‼️
Who is the ISSG?
“Our Mission: The ISSG is a group of surgeons dedicated to the advancement of treatment for adults with spinal deformity.”
Accomplished spine surgeons combine their efforts to produce cutting-edge research to advance the evaluation, treatment, and outcomes for adult spinal deformity.
The ISSG also has a one of the largest (most granular/detailed) DATABASE OF ADULT SPINAL DEFORMITY PATIENTS to aid in this research that drives doctor treatment protocols!
The ISSG has also agreed to advance the advocacy of Scheuermann’s in collaboration with The Scheuermann’s Disease Fund!!
Thank you!! 💜💜

What an HONOR! 👏👏The Scheuermann's Disease Fund has been invited to participate in the INTERNATIONAL SPINE STUDY GROUP (www.ISSGF.org) 2024 annual meeting in August. ‼️
Who is the ISSG?
"Our Mission: The ISSG is a group of surgeons dedicated to the advancement of treatment for adults with spinal deformity."
Accomplished spine surgeons combine their efforts to produce cutting-edge research to advance the evaluation, treatment, and outcomes for adult spinal deformity.
The ISSG also has a one of the largest (most granular/detailed) DATABASE OF ADULT SPINAL DEFORMITY PATIENTS to aid in this research that drives doctor treatment protocols!
The ISSG has also agreed to advance the advocacy of Scheuermann's in collaboration with The Scheuermann's Disease Fund!!
Thank you!! 💜💜

International Spine Study Group - ISSG Research and treatment for adults suffering from spinal deformity.

MARK YOUR CALENDARS!! ☑️
The 11th annual 2024 fundraiser for The Scheuermann’s Disease Fund is scheduled for SUNDAY OCTOBER 6TH at The Alpine Club in Bridgeville, PA from 12:30pm-4:00pm. 🎊🎉
Tickets are only $20 per person at the door (children 12 and under are FREE)! 👏 👍It is always a great day with friends and family. Please contact Doug Strott for Sponsorship/Donation opportunities! 💜💜

MARK YOUR CALENDARS!!
The 11th annual 2024 fundraiser for The Scheuermann's Disease Fund is scheduled for SUNDAY OCTOBER 6TH at The Alpine Club in Bridgeville, PA from 12:30pm-4:00pm.
Tickets are only $20 per person at the door (children 12 and under are FREE)!
It is always a great day with friends and family. Stay tuned for updates!

Thank you…..we honor you this Memorial Day, and every day, for the freedoms your sacrifices allow us to hold most dear. 💜🙏

Great innovations happening at the University of Pittsburgh! H2P!

Collaborative Research Unlocks Progress University of Pittsburgh researchers partner to push what’s possible in medical and mobility solutions.

A heartfelt thank you 💜💜 to the esteemed spine surgeons that have graciously agreed to join The Scheuermann's Disease Fund's initiatives to drive research, funding, and patient advocacy for Scheuermann's disease/kyphosis.

Many on this list have already demonstrated, through their research and previous/ongoing clinical studies, the need to better understand the burden in adolescence and adulthood of Scheuermann's.

From our humble beginnings over a decade ago through the support of Jason E. Lowenstein, MD, https://jasonlowensteinmd.com/ , who still is an integral part of the initiative, join us in extending a warm welcome to these brilliant minds as we embark on this transformative research journey together!

Alan H. Daniels, MD https://universityorthopedics.com/physicians/daniels/
Bassel George Diebo, MD
https://universityorthopedics.com/physicians/diebo/index.html
Eren O. Kuris MD
https://universityorthopedics.com/physicians/kuris/index.html
David Polly, MD
https://med.umn.edu/bio/david-polly
Peter Newton, MD
www.rchsd.org/doctors/peter-o-newton-md/
Baron Lonner, MD
https://profiles.mountsinai.org/baron-s-lonner
Shay Bess, MD
https://healthonephysiciangroup.com/physicians/profile/Dr-Shay-Bess-MD
Michael Kelly, MD
www.rchsd.org/doctors/michael-kelly-md/

Thank you all for your support and helping with our mission!
The Scheuermann's Disease Fund
www.sdfund.org

Expanding our west coast surgeon research/advocacy team!
We are lucky enough to have Dr. Michael Kelly join and support our initiatives.
Kelly, M.D.(https://www.rchsd.org/doctors/michael-kelly-md/) is the director of scoliosis and spinal deformities in the Division of Orthopedics & Scoliosis at Rady Children's Hospital-San Diego
Prior to coming to Rady Children's as the director of scoliosis and spinal deformities, Dr. Kelly was an associate professor of orthopedic and neurological surgery, director of the fellowship in adult and pediatric spine surgery, and director of spine research at Washington University in St. Louis. He has conducted extensive research focused on improving the quality of care, including surgical treatment, in patients with spinal conditions and deformities through both clinical and translational projects. He also has extensive experience in managing the most complex of adult and pediatric spinal deformities. He continues to perform research across the ages as a member of the International Spine Study Group (ISSG, https://issgf.org/), the Setting Scoliosis Straight & Harms Study Group (pediatrics), and the AO Spine Deformity Knowledge Forum (www.aofoundation.org/spine/research/research-programs/knowledge-forum-deformity). He serves on the board of directors for Scoliosis Research Societyiosis Research Society.
He has over 150 peer-reviewed publications focused on patients with spinal conditions, and improving outcomes for pediatric and adult spine surgical treatment.
Lucky to have you on the team Dr. Kelly, looking forward to increasing understanding of Scheuermann's all around!
Alan H. Daniels, MD, (https://orthopaedics.med.brown.edu/people/alan-daniels-md) can't thank you enough for the introduction and helping with leading our charge as well!


Doug Strott
Doug Wheeler

Exciting News Alert!

We are thrilled to announce that the brilliant Shay Bess, MD (https://issgf.org/members/shay-bess-md) has joined the Scheuermann's spine surgeon research group!
Dr. Bess's wealth of expertise and dedication to advancing spinal health, plus his studious focus on research and international surgeon collaboration through the International Spine Study Group (ISSG), https://issgf.org/, will make a monumental impact on our mission to support those affected by Scheuermann's disease/kyphosis.

In addition, Dr. Bess and the ISSG Executive Committee have been kind enough to invite The Scheuermanns Disease Fund to the 2024 ISSG event in Las Vegas, August 15-17. The charity will be at the heart of the ISSG patient advocacy representation effort.

Dr. Bess also secured us a spot at the annual event to present on our last 10+ years of patient advocacy. What a platform and phenomenal opportunity!

Dr. Bess, thank you for everything you do, we're elated to partner and grow with you!

Doug Strott (Founder/President)
Doug Wheeler (Patient Advocate)

Smiles all around!🤩👏👏

We’re so excited to welcome Dr. Baron Lonner (https://profiles.mountsinai.org/baron-s-lonner) as one of our newest partnered researchers. Anyone dealing with spinal malalignment, as a patient or medical specialist, knows of Dr. Lonner’s research, technology advancement and tremendous care.

With over 120 publications in the orthopedic literature, Dr. Lonner’s research interests include outcomes in spinal deformity surgery and nonoperative care. He and his team have developed two new outcome instruments for adolescent idiopathic scoliosis (AIS). He is a reviewer for four spine journals and is an associate editor on the editorial board of the Journal of Spinal Deformity. Dr. Lonner is a board member of the Scoliosis Research Society and the Setting Scoliosis Straight & Harms Study Group.

Welcome to the team, Dr. Lonner and thank you for offering your help and expertise to advance Scheuermann’s research.
*A special thank you to Doug Wheeler for coordinating these research efforts.





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Smiles all around!🤩👏👏

We're so excited to welcome Dr. Baron Lonner (https://profiles.mountsinai.org/baron-s-lonner) as one of our newest partnered researchers. Anyone dealing with spinal malalignment, as a patient or medical specialist, knows of Dr. Lonner's research, technology advancement and tremendous care.

With over 120 publications in the orthopedic literature, Dr. Lonner’s research interests include outcomes in spinal deformity surgery and nonoperative care. He and his team have developed two new outcome instruments for adolescent idiopathic scoliosis (AIS). He is a reviewer for four spine journals and is an associate editor on the editorial board of the Journal of Spinal Deformity. Dr. Lonner is a board member of the Scoliosis Research Society and the Setting Scoliosis Straight & Harms Study Group.

Welcome to the team, Dr. Lonner and thank you for offering your help and expertise to advance Scheuermann's research.
*A special thank you to Doug Wheeler for coordinating these research efforts.





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A fantastic 2018 study by many world renowned spinal malalignment surgeons (many in our SD research team).
Health related quality of life (HRQL) data was collected, preop and 2 year follow-up post op, from Scheuermann's and AIS (adolescent idiopathic scoliosis) patients.
Data collected was used to determine changes such as pain, mental health, activity, and self-image.
CONCLUSION: Surgery for Scheuermann's patients in the adolescent population results in significant improvements in HRQOL, which outpace those of the AIS population.
Astounding findings!

Quality of Life Improvement Following Surgery in Adolescent Spinal Deformity Patients: A Comparison Between Scheuermann Kyphosis and Adolescent Idiopathic Scoliosis - PubMed Level II.

NEW BREAKTHROUGH STUDY - Difficult questions to answer for an adolescent diagnosed with Scheuermann's disease:
-Should I have corrective spine fusion surgery?
-What will happen if I don't?
Research has found that adolescent Scheuermann's patients "who has maximized their lumbar hyperlordosis compensation, surgical correction of the deformity should be considered to prevent accelerated degeneration of the lumbar spine."
BROKEN DOWN: If the patient has a "flat or less curvy" spine, they will LESS ABILITY to handle the spine problems that Scheuermann's can cause as they age.
Should the patient have a more "curvy or S-shaped spine", they have a BETTER ABILITY to deal with the effects from Scheuermann's in the future.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10914238/
Author: Dr. David W. Polly, Jr., Scheuermann's research team

www.ncbi.nlm.nih.gov

As promised, here is a link to a helpful section of the The Scheuermann's Disease Fund website:
"TIPS FOR LIVING WITH SCHEUERMANN'S": https://www.sdfund1.org/tips-for-living-with-sd.html

-"What QUESTIONS SHOULD I ASK AT THE FIRST APPOINTMENT WITH MY SPINE SURGEON? What topics should I cover?"👩‍⚕️🧑‍⚕️
- "WHAT SHOULD I DO BEFORE AND AFTER MY UPCOMING SPINE SURGERY? ARE THERE ANY TIPS that will help me with my recovery?"😷🩺
-"I wonder what it was like for SOMEONE TO LIVE THROUGH ONE OF THESE SPINAL FUSION SURGERIES?"

Scheuermanns Disease Fund ​First charity of its kind to help those suffering from Scheuermann’s Disease/kyphosis.

We have so many NEW PEOPLE WHO ARE FOLLOWING The Scheuermann's Disease Fund recently, through social media as well as by finding us via our website (amazing that we are now over 13,000 people in the Facebook groups alone!!).
I was reminded today (thanks Bill Kachinski) that it would be a good idea to mention WHAT WE DO AND WHY.
I spent 25 years in the financial services industry then my spine failed: lived through 5 fusion surgeries in a 3 year period due to the secondary problems caused by Scheuermann's. This forced me into disability retirement at the age of 45.
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I have DEVOTED THE LAST 10 YEARS OF MY LIFE to helping those affected by Scheuermann's disease/kyphosis after starting the charity in 2014 (my full story can be found here on the website: https://www.sdfund1.org/founders-experience-with-sd.html). The Scheuermann’s Disease Fund is the first and only charity solely dedicated to help those affected by the rare spinal disease/malalignment.
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Our MISSION is simple: to IMPROVE THE PUBLIC'S AWARENESS and recognition of this spinal malalignment, IMPROVE EARLY DETECTION in adolescents, and to WORK WITH THE MEDICAL COMMUNITY to better understand the long-term secondary effects Scheuermann's can cause.
We are a 100% volunteer charity. I AM THE ONLY VOLUNTEER THROUGHOUT THE YEAR.
The photo you see with all the wonderful volunteers is from our ANNUAL FUNDRAISER that happens in the fall. I am BLESSED to have THE BEST friends and family who volunteer their time to help for the event and thank the DONORS and SPONSORS. THE PROCEEDS from this event ARE OUR BUDGET FOR THE YEAR.
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WHAT IS IT THAT I DO AT THE CHARITY?
Here are a FEW: Send FREE CARE PACKAGES around the world (over 1,300 so far!), POST NEW RESEARCH on Scheuermann's to the website, PARTICIPATE IN INDUSTRY ORGANIZATIONS to help improve recognition of the disease and charity, do all SOCIAL MEDIA POSTS, RETURN CALLS AND EMAILS from people in need, MONITOR AND ADD TO THE INTERNATIONAL DOCTOR DATABASE, look to improve WEBSITE INFORMATION which is the only depository for data about Scheuermann's on the web, PRESENT AT CONFERENCES (many virtual) to inform patients and doctors about our needs as Scheuermann's patients, PERFORM ALL OFFICE functions, and now we are BUILDING A TEAM OF TOP SPINE SURGEONS TO BEGIN RESEARCH FOCUSING ON THE IMPACT OF SCHEUERMANN'S IN ADULTS. Plus whatever else needs to be done to "keep the lights on."
All of this while being in severe chronic pain (8 to 9 each day on a scale of 10) while knowing that the hours that I can be upright are limited to only a few each day. I do as much as I can for as long as I can. Some days nothing, some days more, some less.
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WHY DO I DO THIS?
Because if not me, then who? Quoting Mark Twain, "The two best days in your life are the day you are born and the day you figure out why." This is where I am supposed to be.
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WHAT NEXT?
The charity is ALWAYS IN NEED OF FUNDS. As is every charity. And I realize all too well what this inflation does to our income, especially on a fixed budget. BUT IF YOU CAN GIVE, PLEASE CONSIDER IT (go to the SUPPORT US button on the website). And a HUGE THANK YOU TO ALL WHO HAVE SUPPORTED ME AND THE CHARITY MONETARILY AND EMOTIONALLY. We also have an extremely generous community of business owners and leaders who support the charity locally and nationally.
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WE ARE ON THE CUSP OF SOMETHING BIG! We have created a team of the top spine surgeons in the US, and we are working on BADLY NEEDED RESEARCH OF HOW SCHEUERMANN'S IMPACTS THE QUALITY OF LIFE IN ADULTS.
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I am always available to help with any questions you may have. Hope this helps and I will be posting regularly about certain helpful sections of our website. 💜💜💜🙏🤩🙏
www.sdfund1.org

Scheuermanns Disease Fund ​First charity of its kind to help those suffering from Scheuermann’s Disease/kyphosis.

Special Announcement!

Through the work of The Scheuermann's Disease Fund and patient advocate Doug Wheeler, we have reached out to top spine surgeons throughout the country to ask if there was an interest in joining forces with other elite surgeons to form an advisory group. This group would work to improve patient treatment protocols/practitioner knowledge of Scheuermann’s disease/kyphosis by advancing research and multifaceted advocacy.

The goal is to try and fill the void of research of how Scheuermann’s affects the quality of life in adults as they age, thereby improving patient treatment and practitioner knowledge.

Our first contact was with Alan H. Daniels, MD, of The Warren Alpert Medical School of Brown University and University Orthopedics. Dr. Daniels couldn’t have been more gracious as we were met with optimism and genuine kindness. We are truly thankful. In fact, Dr. Daniels asked his colleagues to help, Bassel G. Diebo, MD and Eren O. Kuris MD.
From that point forward, every spine surgeon that we contacted has been similarly passionate about this mission. There is a desperate need in research and improved treatment that needs to be addressed.

Now, we are extremely proud to announce that David Polly, MD, who is the world leader in image guided spine surgery, will be bringing his extensive experience, in both research and practical applications, to the Scheuermann’s research and advocacy group.

Dr. Polly is currently the Chief of Spine Surgery at of Minnesota Medical Center University of Minnesota Medical Center (https://bettercaremn.umn.edu/university-minnesota-medical-center). Previously, Dr. Polly was Chief of Spine Surgery for over 10 years at Walter Reed Army Medical Center, served as a former President of the Scoliosis Research Society, and was an Elected Board Member of Councilors for the American Academy of Orthopedics.

Dr. Polly provides spine care for children and adults and his team of surgical spine professionals have been using intra-operative imaged guided technology for over 6 years, publishing multiple papers on the topic.

Please join me in welcoming David Polly, MD to the Scheuermann’s advisory research group.

As previously announced, Dr. Polly will be joining Alan H. Daniels, MD, Bassel G. Diebo, MD, and Eren O. Kuris MD from The Warren Alpert Medical School of Brown University, Jason E. Lowenstein, MD of The Advanced Spine Center, and Peter Newton, MD of Rady Children's Hospital-San Diego to address the lack of research on how Scheuermann’s affects the health of adults as they age.

More Exciting News!

In efforts to grow visibility, research and funding to better understand Scheuermann’s disease/kyphosis, Dr. Peter Newton, Chief of Orthopedic Surgery at Rady Children's Hospital-San Diego has joined our advisory team through The Scheuermann's Disease Fund to drive awareness and patient/practitioner knowledge.

On a personal note, Dr. Newton is close to our hearts. Dr. Newton performed a corrective procedure (T4-L2 Fusion) on one of our patient advocates, Doug Wheeler, at Rady's Hospital in 2000 for Scheuermanns.

We are beyond grateful to have Dr. Newton join our growing research advisory team including Alan H. Daniels, MD (Spine Surgery Division Chief), Bassel G. Diebo, MD, Eren O. Kuris MD of The Warren Alpert Medical School of Brown University, Jason E. Lowenstein, MD; and maybe more names will be coming soon! 😉

Thank you to the research/executive communication teams at New York University, The Warren Alpert Medical School of Brown University and Rady Children's Hospital-San Diego for coordinating these efforts!💜💜

Thank you to Doug Wheeler (Olympic Surgical, Inc.) for helping to lead the coordination from the patient advocacy side.

Big things to come!

Top spine surgeon joining Scheuermann’s disease research!!
The Scheuermann's Disease Fund is extremely proud to announce that Jason E. Lowenstein, MD will be partnering with the charity to advance much needed research, specifically for adults with Scheuermann’s disease.
Dr. Lowenstein specializes in treating spinal malalignment in adults and children and has a particular interest in complex revision surgery for patients who have had previous spine surgery and have associated failed back syndrome. Dr. Lowenstein focuses his practice in New Jersey and New York at Morristown Medical Center and NYU Langone Medical Center and has earned his reputation as one of the nation’s premier spine surgeons.
I personally know how gifted and talented Jason E. Lowenstein, MD is at performing the most complex and difficult spine surgeries. Dr. Lowenstein performed 3 revision surgeries on my spine and agreed to take my case after the original spine surgeon who performed my first anterior/posterior lumbar fusion referred me. Jason took ALL the most difficult spine surgery cases for Central Texas (at that time) and does the same for the NY/NJ area for spinal revisions.
Please join us in thanking Jason Lowenstein, MD, for being a part of this amazing team of gifted spine surgeons who are dedicated to improve the treatments adults with Scheuermann’s receive here in America, and around the world (Scheuermann’s disease is the world’s 2nd most common spinal malalignment).
Special thanks to Doug Wheeler and Olympic Surgical, Inc. The development of this “Dream Team” of the country’s spine surgeons to aid Scheuermann’s patients would not be possible if it were not for Doug Wheeler and Olympic.Surgical. Doug is a fellow Scheuermann’s patient who has dedicated his time to improve the lives of those living with this rare disease/spinal malalignment.
The Scheuermann's Disease Fund recently announced a research partnership with The Warren Alpert Medical School of Brown University and University Orthopedics spine surgeons Alan H. Daniels, MD, Bassel Diebo, MD, and Eren O. Kuris MD.
Jason E. Lowenstein, MD will be adding his expertise to the already talented group of surgeons who will forever advance the treatment protocols for adults with Scheuermann’s, now and in generations to come.

Today is RARE DISEASE DAY!!
The Scheuermann’s Disease Fund joins all other rare disease org’s bringing attention to our cause!

We are proud to bring this outstanding mission to everyone’s attention.
A very bright and determined young man has created an awareness campaign for Scheuermann’s disease for the countries of Czechia and Slovakia as his college dissertation.
We at The Scheuermann’s Disease Fund are proud to support Tadeáš Řáha in his mission and congratulate him on his success.

“MISSION 2024 – FROM REGIONAL TO GLOBAL CHANGE?
This year, we are on a mission to dramatically increase early diagnosis & treatment of Scheuermann’s disease and scoliosis for thousands of children and adults in Czechia and Slovakia (Central Europe). We’re attending medical conferences and congresses, publishing in magazines for medical professionals and the general public, cooperating with medical organizations, and reaching out to medical faculties and hospitals.
Like many of us, I suffer from chronic & progressive back pain. I cannot count the moments of despair over what this disease has taken away from me. I lost my job, my hobbies, my partner, and my dreams. I’ve been misdiagnosed too many times to count, and left untreated until it was too late. It was all in my head, this disease does not cause pain, they told me.
The physical pain & the mental pain from medical gaslighting have led me to one conclusion: something must be done. Our goal is to contribute to the early diagnosis and treatment of at least 10,000 children over the next 10 years. I’m immensely grateful to everyone who has been helping me on this journey. Among them is Doug Strott, a founder of Scheuermann’s Disease Fund, who has dedicated his life to making a true difference. I hope we can return his support through our fundraising efforts.
ℹ️ At the end of the campaign, which will last until the end of the year, I will compile a manual in English, in which I will describe the entire process, with all successes and mistakes. If there are people from different corners of the world who have enough motivation to replicate the campaign, one day we might achieve truly global change.
Tadeáš (Tad)”