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AnnualReport

2009

act

Our Inaugural Year In Review

Income By Category

Expenses By Category

Board of Directors

Medical Advisor

2009 Donor List

TABLE OF CONTENTS

We are extraordinarily proud to report on 2009, the inaugural year for the Dravet Syndrome Foundation. The mission of the Dravet Syndrome Foundation (DSF) is to aggressively raise research funds for Dravet syndrome and related conditions, while providing support to affected individuals and families. We pride ourselves on maintaining operating expenses at a minimum to ensure that the gift of every donor truly brings us one step closer to a cure. We understand:

• The need to fund innovative research • The urgency in fi nding better treatments • The motivation of our donors to make an impact specifi cally in the fi elds of Dravet syndrome and related conditions • The importance of transparency and accountability of not only our organization, but the researchers that we fund

Generous donors helped us with start-up costs and initial funding for our fi rst research grant. Many volunteers have contributed their time and talent to our organization from hosting fundraising events to managing the website. Those who do volunteer fi nd immense personal satisfaction knowing that their individ-ual service is making a difference in the lives of children with Dravet syndrome, as well as their families. However, even more support will be needed going for-ward as we work towards fulfi lling major research grants in 2010.

We thank everyone responsible for the accomplishments recorded in this report, which enabled us to establish the DSF and obtain non-profi t status so quickly. In addition to generous donors, this also included several businesses and indi-viduals who contributed their talents and services pro bono.

We greatly appreciate the generosity of everyone who assists us as we work to-wards fulfi lling our mission.

Thanks to the generosity of many people – from family members and friends to corporations to those sympathizers we have never met – we will award our fi rst $100,000 research grant in April of 2010. If that is possible in less than 6 months from our inception, we believe that by working together we can fi nd a cure in our children’s lifetime!

OUR INAGURAL YEAR

INCOME BY CATEGORY

Total: $15,912.00

General Donation / Individuals

$12,517.00

Fundraisers

$3,395.00

78.66 %

21.34 %

78.66 % General Donations / Individuals 12,517.00

21.34 % Fundraisers 3.395.00

% Category ($) Amount

Taxes & Licensing

Other

Legal & Professional

Insurance

Fundraising

Ciara’s Butterfly Bash Expense

17.15 %

22.16 %

23.71 %

7.94 %

15.35 %

13.69 %

EXPENSE BY CATEGORY

22.16 % Taxes & Licensing 1,395.00

17.15 % Ciara’s Butterfl y Bash Expense 1,079.35

15.35 % Fundraising 965.63

13.69 % Insurance 862.00

7.94 % Legal & Professional 500.00

23.71 % Other 1,492.50

% Category ($) Amount

Dravet Syndrome Foundation11 Nancy Drive Monroe, CT 06468

Tel/Fax: 203-880-9456

www.dravetfoundation.org

BOARD OF DIRECTORS

Lori O’DriscollPresident

Mary Anne MeskisVice-President

Amanda RenzSecretary

We are honored to have Dr. Jack M. Parent as the Medical Advisor for the DSF. Jack M. Parent, M.D., is an associate professor of neurology, director of the Neurodevelopment and Regeneration Laboratory, and co-director of the Comprehensive Epilepsy Center in the University of Michigan Medical School. His current research interests include neural stem cell transplantation to treat brain injury and neurodegeneration, and the modifi cation of adult neural stem cells to promote brain repair after stroke or prevent epilepsy.

Dr. Parent earned a Bachelor of Arts degree, with distinction, in human biology from Stanford University and his medical degree from the Yale University School of Medicine. He completed a medical internship and neurology residency at the University of California, San Francisco (UCSF), where he was selected chief resident. He stayed at UCSF for clinical fellowship training in epilepsy and clinical neurophysiology, and postdoctoral training in neuroscience research.

An internationally recognized research leader in the fi elds of neural stem cell biology, regeneration after brain injury and epilepsy, Dr. Parent established the Neurodevelopment and Regeneration Laboratory at the U-M in 2000.

He has received several awards for his research, including a Junior Investiga-tor Award from the American Epilepsy Society, a Paul Beeson Physician Faculty Scholars in Aging Award, a Dreifuss-Penry Epilepsy Award from the American Academy of Neurology, and a Grass Foundation Award in Neuroscience from the American Neurological Association.___________________________________________________________________

IN KIND SUPPORTERS

We are deeply grateful to those who donated services to DSF in 2009. Pro Bono PartnershipsSilver Creative GroupSusanna Lamey

MEDICAL ADVISOR

Ann Sandra Berkon

Michael and Sarah Bartel

Janet Battaglia

Michael Bean

Marie and Wayne Beckmann

Bernard and Diletti, Inc.

Roberta and Harry Berry

Robin Berry

Chris & Angela Boyko

Jack and Ellen Brouwers

Christopher Brown

Kelli & Tim Brownewell

Clare and Michael Carey

June Cerqua

Chicago Lawn Sertoma

Carole A Cohen

John & Lisa Culpepper

Eric and Kathrina Davis

Patrick Danis

Corey W. Dobbs

Steve Dockery

Linda Fongemie

Vivian Giansante

Sue Goodliffe

Darren and Amy Greving

Stephen and Mary Jo Hazard

Dr. Skip Himelstein

John and Julie Jacobs

Marian Johnston

Kris Karich

Sharon Keagle

Tracee Keagle

Jodi Kikkert

David and Barb Lindquist

Tom and Lori Lowe

Selma Mandell

Eileen Mantych

Dick McFadden

Christopher McLamb

Mary Anne and Bob Meskis

Patricia Mickler

David and Virginia Miller

Jamie Mitchell

Marsha and Larry Mitchell

Maureen Monaco

Irene Moshouris

Sabrina Mountford

Maureen and Chuck Neyrinck

Donna Nunno

Lori and Liam O’Driscoll

Nina Otchis

James &Virginia Padula

Painting & Wallpapering, Etc.

James and Janet Parkin

Lisa and Alex Petralia

Michele and Pete Pistone

Amanda and Christopher Renz

Joe and Kim Retallick

Frankand& Pamela Robbins

Jill Ryan

Patricia Sampieri

Donald and Margaret Schwendner

Michael and Susan Shrader

Janice Stanley

Deb and Terry Vallance

Theresa Voss

Jim and Gloria Walkowiak

Wauconda Funeral Home, P.C.

Dolores Whalen

John and Adrian Whalen

Tim and Sheila Whalen

Floyd and Val Whitman

Will County Deputy Sheriff ’s Union

Jeffrey and Lauren Winter

Lois Winters

Ewelina Wrobel

Exclusive Agency, LTD

House of Roland, Inc.

Kathryn and Darren Romano

2009 DONOR LIST