KLS Foundation 2011 Report
KLS Foundation Members
This has been an incredibly exciting year for the Kleine-Levin Syndrome (KLS) Foundation and the KLS Community. Attached is a pdf of the KLS Foundation 2011 Report. As we enter a new year, we ask that you keep believing in the difference we can all make. We need your help to continue the work that is outlined in this report. Thank you for your continued support.
KLS Foundation Co-President
2008 Annual Report
The Kleine-Levin Syndrome (KLS) Foundation is proud of the significant progress made this year in furthering our mission. In this Foundation Report, we reflect on the significant growth and impact the KLS Foundation has had since it’s founding in 1999.
Kleine-Levin Syndrome (KLS) is a life-alternating illness that mostly affects teenagers and young adults. The focus of the KLS Foundation over the last few years has been on providing information and support to KLS patients and families, helping to educate the medical community about KLS, raising funds, and promoting KLS research programs.
Generating top-quality research interest in a rare illness like KLS is not easy. The KLS Foundation set out to initiate KLS research programs by providing “seed” funding. This has blossomed into larger programs at leading academic and hospital centers around the world, including Stanford University in California, the Tel Aviv Medical Center in Israel, the University of California San Francisco and the Hôspital Pitié-Salpêtrière in Paris. These efforts culminated this past year in Prof. Emmanuel Mignot of Stanford University receiving the first NIH grant for KLS research, a very competitive five-year research award.
The Foundation continues its efforts to raise awareness and share up-to-date information regarding KLS and ongoing research efforts. We continue to look for opportunities to plug into professional networks through conferences and group meetings, to improve the quality of information available and the Foundation website.
The KLS Foundation is committed to supporting those with KLS, to expanding the community’s knowledge and understanding about KLS and to foster further research into the cause, treatment and ultimate cure for KLS.
Our success in the past few years could not have been possible without the tremendous support of our members, their friends and families, and all of the supporters of the KLS Foundation.
On behalf of the KLS Board of Directors we thank you for your generous support.
Neal Farber, PhD Stephen Maier, CPA
Co-President KLS Foundation Co-President KLS Foundation
KLS FOUNDATION UPDATE: SUMMER 2008
Newly formed KLS Advisory Board
The KLS Foundation expanded this year by creating a KLS Advisory Board and welcoming three new advisory board members. These individuals are dedicated to the mission of the KLS Foundation and are a great asset to the Foundation.
The new advisory board members are:
Gaylene Fisch, RN, BSN, CNOR
Gaylene’s 15 year-old son Brian Sabul had his first episode of KLS in April of 2007. Gaylene credits the KLS Foundation with helping Brian receive an accurate diagnosis within weeks of his first episode, attesting to the value of the education and outreach provided by the KLS Foundation. Gaylene is a Registered Nurse and is working with Board member Lori Haller to present KLS information to pediatricians, neurologists, behavioral physicians and other doctors.
Donna’s son Ryan McKinney suffered from KLS without a diagnosis for over seven years. Ryan tragically died of a heart attack from an unrelated medical condition in 2006 and his death inspired Donna to raise awareness of KLS in the hopes that other children would not continue to suffer from this devastating syndrome. In 2007, Donna organized the first annual “Walking for Ryan Festival” in South Carolina to raise funds for KLS research. Donna is an ESL instructor and bilingual Spanish translator for the Lancaster County School District and founder of the South Carolina Chapter of the KLS Foundation.
Christine is the mother of Joseph Penney who had his first KLS episode in December 2005, at the age of 16. Contact with the KLS Foundation became an invaluable support system for the Penney family. Christine actively volunteers for a variety of school and local organizations. She is also an advocate for raising KLS awareness in her community and has organized two very successful fundraisers for the KLS Foundation.
You are invited to join our effort
If you are interested in joining our dedicated group of volunteers, please contact Lucinda Maier at: email@example.com. We are always in need of individuals who can share their creativity, talents or professional skills with the KLS Foundation.
KLS in the Media
The unusual, unexplained symptoms and compelling stories of KLS patients continue to generate interest by various media outlets. Production of medical television programs about KLS continue both in the US and in Europe. With the assistance of the KLS Foundation, British television company ITV Productions aired a documentary about KLS in Europe on July 31, 2008.
As an indirect benefit, the film brought the Wong family from Seattle, Washington to Boston for a day of filming at the home of the Farbers, allowing Alanna Wong and her parents to meet another KLS family for the first time.
Tanis Burnett, a KLS patient in Canada, and a child of the internet age has produced a series of video blogs and a music video depicting her experience of life with KLS. The Foundation’s website has been updated to include links to these videos.
During the year there have also been a number of articles about KLS printed in magazines and newspapers. A full list of these articles is available on the KLS Foundation web site, http://www.kleinelevin.com
Conferences and Professional Networks
KLS Foundation board members have organized informational meetings at local hospitals as well as attended meetings of local chapters of the American Academy of Pediatrics. The Foundation continues to identify ways to further inform the medical community about KLS and to decrease the time between the onset of KLS to accurate diagnosis.
Rafael Pelayo, MD, Director of Pediatric Sleep Service at Lucile Packard Children’s Hospital at Stanford University presented a talk entitled “Comparison of Narcolepsy and Kleine Levin Syndrome” during the Annual Pediatric Sleep Medicine Conference held March 2008 at Amelia Island, Florida. This conference focused on the “Next Steps in Research, Patient Care, Policy and Education” and was sponsored by the Medical School of Brown University.
During the spring of 2007 the KLS Foundation partnered with NetRaising to upgrade and help maintain the http://www.KLSFoundation.org website.
New additions to the website include:
1. Diaries that share first person experiences of KLS patients and their families. Many families have said these diaries are valuable in helping them begin to understand KLS.
2. A comprehensive bibliography of KLS medical and scientific articles beginning in 1925 (mostly single case reports), as well as a list of research papers in which a cohort of KLS patients was more extensively studied.
3. A new chat room with improved functionality, security and monitoring.
4. Online donation capabilities to facilitate tax-deductable donations to the Foundation.
Fundraising continues to build momentum. Local fundraising events held in 2006 helped to launch larger events in 2007 and 2008 including the following:
Sunday at the Cinema: Over 200 friends and supporters of the KLS Foundation attended a benefit for the Kleine Levin Syndrome Foundation entitled Sunday at the Cinema on April 29, 2007. The benefit was organized by caring friends of the Farber family, whose son and daughter had episodes of KLS for over ten years. The event began with a festive reception followed by a presentation about KLS and the screening of the award winning Korean film “Spring, Summer, Fall, Winter … and Spring.”
Sunday at the Cinema was a huge success. It heightened awareness about KLS, educated the Boston community and raised over $70,000 for KLS research. The community was honored to have an opportunity to make a difference in the lives of children and families suffering from KLS.
Walking For Ryan: Organized by Donna White in memory of her son Ryan McKinney, this fundraiser raised awareness about KLS and approximately $10,000 for KLS medical research. On March 31, 2007, the Lancaster, South Carolina community enjoyed many activities at the track and field recreational center. Donna, KLS Foundation Board of Directors representative Dani Farber and US Olympic gold medalist sprinter Shawn Crawford led the community around the track in a symbolic lap for Ryan and KLS research. In 2008 the Walking for Ryan fundraiser raised another $5000 for KLS.
Montvale Plaza Event: Joe and Christine Penney and their friends organized a KLS fundraiser held on April 6, 2007 at the Montvale Plaza in Stoneham, Massachusetts. The evening included dinner and dancing, a stand up comedian and a very successful silent auction. The 2007 Montvale Plaza Fundraiser raised nearly $40,000 for the KLS Foundation. A second Montvale Plaza Fundraiser in 2008 brought in another $23,500 for KLS.
Both ‘Walking for Ryan’ and the Montvale Plaza fundraisers will become annual KLS Fundraisers with successive events planned for 2008.
The KLS Foundation is available to offer assistance or speakers for KLS fundraisers you wish to organize in your community.
Stanford University’s KLS research program continues to investigate the nature of KLS. A detailed report on current research is available at: http://www.kleinelevin.com
Fundraising efforts raised approximately $137,000 and $64,000 in 2007 and 2006, respectively. The Foundation continues to utilize the vast majority of donated funds to directly support research, education and awareness efforts, with a minimal amount used for Foundation administrative expenses.
A summary of operations follows.
Year End 2006 KLS Report
2006 KLS Foundation Report
The Kleine-Levin Syndrome (KLS) Foundation continues to make progress in raising awareness of KLS in the international medical community and amongst the public, supporting those affected by KLS and promoting medical research.
The Foundation’s activities and achievements during 2006 include:
The Foundation continues its major effort to support research on the cause and treatment of KLS. Current research programs are focused on possible genetic, viral, autoimmune and environmental causes of KLS. Tentative results this past year from the Stanford University Sleep Center, under the direction of Dr. Emmanuel Mignot, include:
1) finding of an increased prevalence of KLS in the Jewish population, suggesting a possible genetic predisposition;
2) identification of multiple cases of KLS within families, also suggesting a genetic predisposition, although shared environmental effects cannot be excluded;
3) establishment of a collaboration between Stanford University and University of California SF to collect clinical samples and, using cutting edge research techniques, investigate a possible viral involvement in KLS and
4) completion of a study showing a lack of association of KLS with HLA (an autoimmune disease marker).
Some of these findings have been submitted for publication in a high impact medical journal.
The Stanford research lab hired a Clinical Research Assistant to join the growing scientific team and is collaborating with renowned labs at UCSF and hospitals in France (Hôpital Pitié-Salpêtrière, Paris) and in Israel (Sourasky Medical Center, Tel Aviv).
KLS Research Symposium
The first medical symposium on KLS was held as part of the Associated Professional Sleep Societies (APSS) Annual Sleep conference in Salt Lake City, Utah on June 19, 2006. APSS is a joint venture of the American Academy of Sleep Medicine and the Sleep Research Society. Over 5,000 sleep medicine physicians, researchers and professionals from around the world attended this five-day event. The symposium on current KLS research, entitled “New Developments in Kleine-Levin Syndrome” featured talks by physicians from the US, France, Israel and Taiwan. In order to maximize this opportunity for scientific exchange, the KLS Foundation hosted a dinner and discussion on the current and future directions in KLS research for the symposium presenters and those interested in KLS.
The KLS Foundation web site is a valuable source of information and a major means of communicating for KLS patients, families and the medical community. This year it has been updated to a new, more user-friendly format. New content has been added, such as research up-dates, a list of doctors familiar with KLS, sections about educational accommodations and disability rights for KLS patients, “KLS in the News” and other important Foundation information. There are currently more than 500 KLS patients and family members registered on the Foundation web site, and the message board chat room has been helpful to many seeking information about KLS.
KLS in the Media
Educating the public about KLS is an important goal of the KLS Foundation and the Foundation has been active in promoting media coverage of KLS. National television news shows including ABC’s “Primetime,” CNBC’s “The Big Idea with Donny Deustch”, CBS’s “The Montel Williams Show” and CNN’s “Paula Zahn Now” aired stories about KLS this year. Other US and international television networks continue to express interest about producing KLS segments. The KLS Foundation is looking for additional volunteers who are willing to participate and share their KLS stories.
The Cleveland Jewish News ran a feature story about KLS featuring two KLS patients from Boston, Massachusetts in a special health section on October 13, 2006. The Weekly Reader Current Science magazine, a science weekly reader for elementary school students, ran a story about KLS in the October 2006 issue featuring a patient from Placentia, California. The Lancaster News ran multiple stories of a KLS mother’s efforts to raise funds and awareness about KLS.
KLS Foundation members have organized local fundraising events including a sponsored runner in the New York City Marathon, social fundraisers with raffle draws, and educational programs at community schools which later led to fundraising drives undertaken by the students. These grassroots efforts educate the public about KLS as well as raising important funds for the foundation’s research initiatives.
The Foundation has begun soliciting corporate donations and received its first corporate gift this year from CRA International, Inc. In addition, multi-year research grants have been submitted to government funding sources by our academic collaborators in order to expand research possibilities.
Fundraising efforts raised approximately $64,000 in 2006. The Foundation continues to allocate over 95% of donated funds to directly support research efforts, with less than 5% used for Foundation administrative needs.
In the upcoming year we will be focusing our efforts in the following areas:
· continuing to financially support the research groups, and helping to identify and refer new KLS cases to the research teams
· fostering new research in other laboratories
· increasing the exposure of KLS information to the medical community through participation in conferences and professional events
· seeking additional media opportunities to facilitate the spread of information about KLS to the public
· increasing ongoing fundraising efforts through renewed solicitation drives.
· continuing to be a source of comfort and information to families who contact us after a loved one is diagnosed with KLS.
The KLS Foundation continues to look for dedicated volunteers and potential board members who are willing and able to donate their time and skills to help the Foundation grow by assisting with fundraising, grant writing, publicity, website design, or general support. Please contact the KLS Foundation if you can request funds through your company’s charitable giving program or if you are interested in participating in any of our efforts.
Thank you for your continued support.
2005 Foundation Report
During 2005, the Kleine-Levin Syndrome Foundation, Inc. has continued to be an important network to identify and support individuals and families affected by Kleine Levin Syndrome (KLS). The Foundation exchanges information with patients and the medical community to help in the diagnosis and care of those affected by KLS. We are all very encouraged by the progress and activities of the Foundation during this past year:
• The KLS Foundation partnered with the Stanford University Sleep Center to establish a basic and clinical research program on KLS under the direction of Dr. Mignot. This has already resulted in the publication of a comprehensive medical review article on KLS (Arnulf, et al., “Kleine-Levin syndrome: a systematic review of 186 cases in the literature” Brain, 2005 Dec,128:2763-76). Over 100 KLS individuals and families participated in the KLS questionnaire and blood collection phase of the research
.• The Foundation has partially supported the Stanford University studies. This research program has already generated further research interest from groups in France and Israel. Research efforts are underway to explore possible causes of KLS, including autoimmune, genetic and viral causes.
• The Foundation web site continues to serve as a valuable information resource on KLS. During 2005, the number of hits to the website and the number of registered KLS individuals significantly increased. A chat room was added this past year and further enhancements to the website are planned for 2006
.• A scientific symposium on KLS is being organized for the June 2006 meeting of the Associated Professional Sleep Societies. This will be the first time a dedicated session on KLS will be held at a medical conference.
• The Foundation continues in its mission to educate the public and healthcare professionals about KLS. During 2005, the Foundation has presented at the Sleep Disorders Research Advisory Board meetings of the National Institute of Health. This past year stories on KLS were aired by Fox TV News affiliate in Los Angeles as well as on national CCN news. After each telecast the Foundation received numerous inquiries about KLS.
• The Medical Advisory Board and Board of Directors have been expanded during the year.
• Ongoing fundraising efforts raised over $40,000 during 2005 and have raised over $100,000 to date. Due to the relative rarity of KLS, the interest and available funding for initial research is a challenge. Through the end of 2005, the Foundation invested over $70,000 of donations in research. Currently less than 5% of funds donated during 2004 and 2005 have been used to support the general and administrative activities of the foundation, including web site maintenance, with the remaining expenditures going directly to fund research efforts.
The Foundation’s goal is to raise $300,000. This will enable the Foundation to continue to provide seed grants to generate research results. It is then expected that with some preliminary data, KLS researchers will be able to apply for more substantial government research grants.
In the upcoming year we will be focusing our efforts in the following areas: continuing to support the research efforts at Stanford University as well as fostering research in other laboratories both financially and through the participation of our community of contacts; increasing the exposure of KLS information to the medical community through continued participation in association meetings; seeking out additional media opportunities to facilitate the spread of information about KLS throughout the world; updating our website and chat room to provide additional functionality and information; and continuing our ongoing fundraising efforts.
The Foundation continues to look for dedicated volunteers who are willing and able to donate their time and skills.
The website continues to be a valuable source of information for the KLS and medical communities, please be sure you are registered and check the site often for updates.
Thank you for your continued support.