Read more in Microsoft Word(doc) - BDSRA News Flash

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Read more in Microsoft Word(doc) - BDSRA News Flash

    BDSRA News Flash Volume 3, Issue 6 September 2009

    Teach & Be Taught DVD: Volume 3 StemCells, Inc. Demonstrates Protection Of Educating Students with Infantile or Late Neurological Function In Batten Mouse

    Preclinical Proof-of-Concept Data for the Company’s Infantile Batten Disease

    Neural Stem Cells Published in Cell Stem Cell BDSRA Education Specialist, Wendy Bills, PhD, has created PALO ALTO, Calif., September 3, 2009 StemCells, Inc. a third volume for her Teach and Be Taught DVD series. This (NASDAQ: STEM) today announced the publication of newest DVD is specifically for schools and teachers who preclinical data demonstrating for the first time that educate students with INCL and LINCL. It can also help transplantation of its proprietary, purified human neural stem teachers in preschool and daycare settings. It helps to address cells delays the loss of motor function in a mouse model of some of the challenges of a child who cannot speak for infantile neuronal ceroid lipofuscinosis (NCL). NCL, his/herself as well as ways to integrate more sensory directed commonly referred to as Batten disease, is a fatal learning techniques. This DVD is also great for students who neurodegenerative disorder in children. This paper, are in the later stages of JNCL. This DVD was unveiled at “Neuroprotection of Host Cells by Human Central Nervous Conference in July and has been going out to families around System Stem Cells in a Mouse Model of Infantile Neuronal the country. If you would like a FREE copy of Wendy’s latest Ceroid Lipofuscinosis,” was published online today in the DVD, please email Amy Lombardi at If you peer-reviewed journal Cell Stem Cell, and will be featured in do not have the other materials available in the Teach and Be the September 2009 print edition. Taught series (book and first 2 DVDs) you can also request To read the entire story, please visit: these FREE of charge. With school back in full swing, this would be a great resource for any teacher of a child with INCL or LINCL.

     Family Fundraising News

    Tracey Wilson, Director of Development, Event Updates

    Kick Batten's For Carl - Arlington, WA Resigns from BDSRA thLisa Boyle, friend and Physical Education teacher at Post We regret to inform everyone that as of August 28, Tracey Middle School in Arlington coordinated a fundraising event Wilson no longer works for BDSRA. She resigned to accept a in honor of Carl Bergam who passed away in February this position of Executive Director for another non-profit year. They held a Soccer Tournament and Silent Auction organization. Tracey was only here a short time but she helped this past Saturday, August 8th and raised $2,000! the organization build a firm foundation in fundraising and Thank you to the Pre-K - 5th Graders, family and friends awareness building. We are in the process of looking for a who attended this event and made it such a success. They new Director of Development and will notify everyone as look forward to doing it again next year. soon as a replacement has been hired. We wish Tracey the Garage Sale & Raffle - Templeton, MA best of luck in her future endeavors. The Montville Family hosted their first multi-family Yard Sale & Raffle to benefit Late Infantile Batten Disease New Dementia book now available research on August 22, 2009. Included in the raffle were BDSRA Nurse Nancy Carney has created a new publication Red Sox tickets and a BMW bicycle. The event raised called "Dementia in Children, Teenagers and Young Adults: nearly $5,000! Great job Montville Family! A Guide for Parents, Teachers and Care Professionals". This Mostacholli Dinner - Lincoln Park, MI book addresses the dementia issues that many families The Rhodes Family hosted a delicious Italian Mostacholli experience, especially those who have children with JNCL. Dinner at the Living Word Church of God in Taylor, The book explains what can cause dementia, symptoms, and Michigan on August 22, 2009. The benefit raised different therapy interventions. To receive a copy of this approximately $900 for BDSRA! Great job Rhodes Family! FREE publication, please contact the BDSRA National Office. 2009 Hayden's Hope Golf Classic - Two Rivers - WI The Thelen Family hosted the Hayden's Hope Golf Classic which took place on August 22, 2009 at the Emerald Hills Golf Course. Shotgun start began at 2 p.m. with dinner and music following at 5 p.m. All proceeds will

    benefit INCL research. For more information, please visit

    their website:

     BDSRA News Flash 1

     BDSRA News Flash cont. Triva Night for a Cure - Valparaiso - IN Garage Sale Crystal Lake, IL

    Jim & Linda Smith organized a Trivia Night on August Kerrie Kurth was Sara Pfaller’s teacher. Even though 29, 2009 with all proceeds to benefit the BDSRA 2010 Sara passed away earlier this year, Kerrie has Conference on behalf of the Midwest Chapter. The remained committed to raising funds and awareness ththnight was a huge success with 175 participants and over and 26, Kerrie for BDSRA. On September 25

    $7,500 raised for BDSRA! Great job Smith Family! will be holding a garage sale. All of the proceeds raised will go towards the 2010 BDSRA Conference BBQ Blues for Batten - Gateway, CO in Chicago, IL. We wish Kerrie the best of luck! The Gateway Canyon Resorts, located in southwest Colorado, hosted a fundraiser for BDSRA. The event Cardthartic Event - German Village, OH brought together the best of summer on August 29, Cardthartic, a private label greeting card company, 2009, with the first annual BBQ Blues. This event teamed up with Amy Parrish, a renowned featured a number of well-known blues bands for a day professional Photographer, to create a special card of memorable music, along with a BBQ contest to bring featuring Celia Betz who is 2 years old and suffers some of the region’s best grillers to the festivities. For from Batten Disease. The event will take place on more information, please visit their website: Friday, September 26th at the Book Loft in German Village. Half of all proceeds from the sale of the entire line of cards that weekend will go to Upcoming Events BDSRA. Thank you Cardthartic and the Book Loft! 8th Annual Batten Disease Golf Tournament - Please visit the Book Loft’s website at Vacaville, CA The Fairfield Police Officers Association is sponsoring this annual golf tournament in honor of Police Sergeant Highlandville Fun Fest - Highlandville, IA Joe Allio's family and his daughter, Catie, who has The Shuros Family is hosting a fundraiser scheduled Batten Disease. The event is planned for September on September 26, 2009 in their hometown of 11th in Vacaville, California. Good luck! Highlandville, Iowa. The event will feature a Duck Race, Cow Chip Bingo, Live Auction and Hog Roast. Bash for Batten's - Maple Grove, MN Sounds like a Fun Fest! Brandy Wempner is organizing "Bash for Batten's" on September 13, 2009 at the Cambria Suites in Maple Dance & Chinese Auction Gardner, MA Grove, Minnesota. The event will include a Italian Jessica Montville, along with friends and family, will Buffet Dinner and silent auction. Warren Shuros, be hosting a dance and Chinese auction on BDSRA Board Member and Father of Kesley will be a thSeptember 26. The event will benefit LINCL key speaker. Good Luck Brandy! research. Jessica has already received media attention about the event as well! Good luck to the Motorcycle Run Shellbina, MO Montville Family! Tracy Frye is holding a motorcycle run and event on September 17, 2009. The event will raise funds for Spaghetti Dinner - Pittsburgh, PA BDSRA and Kufs (Adult NCL) research. The event will The Grady Family is hosting a Spaghetti Dinner and also include an auction and will feature the amazing Chinese Auction on September 27th to benefit motorcycle displayed at our St. Louis Conference! We LINCL Research. Good luck Grady Family! wish Tracy the best of luck! Batten Disease Research Golf Tournament Metro NY/NJ Chapter Garage Sale Dartmouth, MA Fred & Janet Surrey will be having a garage sale the Mo and Jean St. Gelais are hosting their first ever ththweekend of September 17 & 18 as well as September Batten Disease Research Golf Tournament on th25 and 26th. Proceeds raised will go to Batten Disease September 28, 2009 at the Allendale Country Research. Good luck to the Surreys and the Chapter! Club. Golfers will be treated to 18 holes of golf, refreshments, prizes, and prime rib dinner. You can th8 Annual Golf Tournament Jemison, AL get more information and register for the event by Becky Lucas has been raising funds and awareness for going to their website at Batten Disease for a long time. On September 19, Good luck St. 2009, Becky, along with some wonderful friends, will Gelais Family! thhost their 8 Annual Golf Tournament. Teams of two will have a shotgun start at 8:00am. The event will also

    include a door prizes and a catered lunch. Good luck to


    BDSRA News Flash 2

     BDSRA News Flash cont. Take Flight Triathlon Pre-race Dinner - New Resource Guide for Parents Charlotte, NC Helping Siblings now available The Hawkins Family and Southeast Chapter are Amy Lombardi, Coordinator of Family Services, has planning this event designed to raise funds while created book filled with resources from the internet, featuring health, wellness, and disease research.

    books, and articles, that can help parents address the Four-time Olympian Sheila Taormina, a world

    tough topics that may affect their unaffected champion triathlete and gold medalist at the 1996 Atlanta Olympic Games will be the keynote speaker. children/siblings. Some of the topics covered include

    The dinner will take place on October 3, 2009 and talking to your child, of any age, about their siblings

    they expect 500-600 in attendance. Good luck! illness, living with a sibling who has special needs, books that talk about grief and loss, etc. The resources Uff Da Fest '09 - Spring Grove, MN provided are not specific to Batten Disease, but help This annual event scheduled on October 3rd is a parents navigate conversations about related topics. Norwegian celebration to commemorate Autumn in This publication is FREE and can be obtained by Spring Grove, Minnesota. "Uff Da" typically is an contacting the BDSRA National Office. expression of surprise or "Oh No!". Joining the festivities, the Minnesota Chapter and Bluff County Artists Gallery will host a Hog Roast, Art Auction and Juvenile Trial FundWhere are we? Raffle for a one-of-a-kind ceramic pot made by the renowned ceramic artist, Dean Schwartz who donated the art piece. For more event details, please Juvenile Trial Fundvisit

    2nd Annual "Miracles Can Happen" Gala - $1,000,000

    Mandeville, LA $900,000The Mary Payton Foundation is hosting it's Miracles $800,000Can Happen Benefit which will be held on October $700,0009, 2009 at Benedict’s Plantation in Mandeville, $600,000Louisiana. A live and silent auction will be featured, $500,000along with great food and the band, 4 Unplugged. $400,000They are hoping this event will be even bigger and $300,000better than last year! For more information about $446,279$200,000this event please visit their website: $100, $0

    Dave’s Home Roast Coffees Money Raised as of September 1, 2009David Dahl (son CliffordJNCL) has been in the $446,279coffee roasting business for awhile now. His kitchen and ovens becomes “roasting central” a few times a week. Dave was able to take his coffee roasting business to the internet and has begun serving customers all across the country. Dave sells his In Loving Memory premium roasts for $10.00 per pound. Shipping is Janine & Tracy Bullock, twin daughters of Marilyn $5.00 for the first bag and $2.00 for each additional Bullock, Thornlie, WA, Australia bag. All of the proceeds raised go toward the Juvenile Born: 01/26/78 - Died: 07/30/09 Trial. Please visit Dave’s Etsy store at and buy a bag of his coffee Elisabeth Johnson, daughter of Keith & Alice today! If you have any questions, please feel free to Johnson, Nevada City, CA email Dave at Born: 03/07/87 - Died: 08/17/09 JNCL Family Fundraising Contributions Seth Holder, son of Jocelyn Rowe and Stuart Holder, Did you (or will you) have a successful fundraising event Mandurah, WA, Australia that you would like to inform BDSRA about? Please send a description along with the date and location of Born: 10/10/02 Died: 09/01/09 LINCL the event to new Director of Development Tracey Wilson at Raising money for Batten Disease research and support is an amazing feat and deserves recognition. Submit your event today!

     BDSRA News Flash 3

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