KLS Medical Publications

Learn more about KLS

Most published articles on KLS in the medical and scientific literature are reports of one or two KLS cases by an attending physician. While helpful in confirming and sometimes reporting new observations, these ‘case reports’ usually do not significantly contribute to a better understanding of KLS.

In the last few years, there have been a few more informative studies and review articles based on observations and conclusions from a larger cohort of KLS cases.

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Donations

Help Us Find A Cure

KLS is a very rare syndrome affecting roughly 1000 people worldwide.

As a result there is very little incentive for researchers and pharmaceutical companies to invest in KLS research.

Please consider donating today! Contributions from individuals are critical to the ongoing success of the KLS Foundation’s efforts to educate, support families and find a cure for KLS.

Thank you for your support!

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Doctors Familiar with KLS

Get the Support you need

You may want to use this list as a starting point for your search for a doctor.  Finding a doctor or other health professional that is right for you is a personal process that can take time.

It is important to find someone you feel you can speak with openly and honestly. Even if your doctor does not know much about Kleine-Levin Syndrome (KLS), he or she should take the time to learn about it. As you search for a health care professional, keep in mind that you have certain rights no matter who you are, what challenges you are facing, or how much money you have.  You have a right to: 

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CoRDS Registry & Coordination for Rare Diseases at Sanford – Dick Maier

Dick Maier, KLS Foundation Board Member CFO, shares information about CoRDS Registry & Coordination for Rare Diseases at Sanford. See the PDF link and video below. PDF Link: CoRDS Registry – Dick Maier KLSF CFO

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Supportive Care Strategies and Working with Doctors – Gaylene Grossman

Gaylene Grossman, RN BSN CNOR, KLS Foundation Advisory Board Member, gives an informative presentation on Supportive care strategies, Medications and Working with doctors. See the PDF link and video below. PDF Link: Managing Your KLS Care – Gaylene Grossman RN BSN CNOR

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IDEA and Section 504 Education – Donna Reynolds

Donna Reynolds, South Side Education Advocates, talks about Education rights. See the PDF link and video below. PDF File: IDEA and Section 504 for your student – Donna Reynolds

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Parent Perspective – Lori Haller Schiller

Lori Haller Schiller, KLS Foundation Media Chair, shares the Parent Perspective. See the video below.

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Patient Perspective – Mat Sherman

Mat Sherman, KLS Advocate, shares his patient perspective. See video below.

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Patient Perspective and Why Get Involved in KLS Foundation – Alanna Wong

Alanna Wong, KLS Foundation Board Member, shares her patient perspective and why it’s important to become involved in the KLS Foundation. See PDF and video below. PDF File: 2015 International Conference Patient Perspective – Why it’s Important to become Involved -Alanna...

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“Touched by 2015 Run for Ryan” by Gaylene Grossman

“Touched by 2015 Run for Ryan” by Gaylene Grossman

“Touched by 2015 Run for Ryan” by Gaylene Grossman I feel very fortunate to have attended the 2015 Run for Ryan in Lancaster, South Carolina along with my son Brian, who is a person with KLS.  It was an experience I will never forget and one that touched me deeply. Like many of you, my son and I followed the annual event on Facebook and the KLS Foundation website; appreciating from afar the efforts to raise awareness and funds each year to honor the memory of Ryan McKinney who tragically passed away in 2006.  His mother Donna...

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KLS Tip #1 From Mat Sherman – Don’t let KLS Control You Outside of Episodes

KLS Tip #1 From Mat Sherman – Don’t let KLS Control You Outside of Episodes

Great video from our friend Mat Sherman, what a great attitude and a powerful reminder for all of us! For more videos from Mat and his experiences with KLS, check out his YouTube page, and don’t forget to subscribe. Thanks for letting us share the video Mat!  

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Beth Goodier on BBC

Beth Goodier on BBC

Beth Goodier on BBC Beth Goodier was recently featured on BBC Inside Out. See the informative video below. You can read the BBC article...

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12 Tips for Living With Kleine-Levin Syndrome (KLS) by Alanna Wong

12 Tips for Living With Kleine-Levin Syndrome (KLS) by Alanna Wong

Alanna Wong wrote an article about tips for Living With Kleine-Levin Syndrome (KLS). You can read the 12 Tips she writes about here: 12 KLS Tips by...

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