KLS Foundation Blog

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

Posted by on Dec 2, 2015 in 2015 KLS Conference | Comments Off on 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

Posted by on Dec 2, 2015 in 2015 KLS Conference | Comments Off on 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

Posted by on Dec 1, 2015 in 2015 KLS Conference | Comments Off on 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

Posted by on Nov 30, 2015 in 2015 KLS Conference | Comments Off on 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

Posted by on Nov 30, 2015 in 2015 KLS Conference | Comments Off on 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

Posted by on Nov 30, 2015 in 2015 KLS Conference | Comments Off on 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

Posted by on Jun 8, 2015 in Fundraisers, KLS Events, News Articles | Comments Off on “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

Posted by on Jan 12, 2015 in Uncategorized, Videos | Comments Off on 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

Posted by on Nov 4, 2014 in KLS in the Media, News Articles | Comments Off on 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

Posted by on Aug 15, 2014 in Uncategorized | Comments Off on 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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