Celebrafing 25 Years - Hydrocephalus Association
Transcription
Celebrafing 25 Years - Hydrocephalus Association
Celebrating 25 Years ANNUAL REPORT 2008 We Want to Change the Future After 25 years of providing support, education and advocacy to those living with hydrocephalus, the Hydrocephalus Association has a new mission – to eliminate the challenges of hydrocephalus. This will change the shape of the HA in the years to come. Our support and education of people diagnosed with hydrocephalus and their families has been an essential resource for them in coping with the unknown and guiding them through dramatic life and health changes. But we have grown dissatisfied with this. We want more for our children, parents, brothers, sisters, and friends. We want to change the future. We want better treatments, better outcomes, preventative measures and someday maybe even a cure for each and every form of hydrocephalus. We started this evolution five years ago when we initiated the first ever workshop on hydrocephalus sponsored by the National Institutes of Health (NIH). That watershed event led to the formation of the Hydrocephalus Clinical Research Network and caused NIH program directors to pay more attention to the problems of hydrocephalus. The result was a tripling of research funding for hydrocephalus. However, at less than two million dollars annually, this is a drop in the bucket relative to what is needed. In 2009 we will launch our first multi-year campaign to raise millions of dollars to catalyze and fund promising hydrocephalus research. We are expanding our circle of partners and supporters. We are bolstering our board of directors and staff with the capacity to tackle this bold new mission. We are resolved to eliminate the challenges of hydrocephalus. Momentum begets momentum and we are excited about our ability to join forces with our members and change the future for everyone with hydrocephalus. Paul H. Gross Chairman, Board of Directors Paul and his son William Gross “Can you help me and all the other kids who have hydrocephalus?” Celebrating 25 Years ANNUAL REPORT 2008 2008 2008 was a year of growth for the Hydrocephalus Association. It was a year of new horizons, resources and an expanded mission; while maintaining the Association’s core values. RESEARCH ADVOCACY In 2008, the Association enlarged its vision to include the direct funding of research. Our research initiative, launching in 2009, will focus for the first year on Mentored Young Investigator Awards to support young scientists or clinicians building a career in hydrocephalus research. The award is designed to address the need for a greater number of scientists and physician scientists focusing on hydrocephalus. The Association continued to amplify and unify the voice of those with hydrocephalus nationally through our research advocacy work in Washington, D. C. We drafted a resolution calling for more federal support of hydrocephalus research, which passed the U.S. Senate in January 2008 (S. Con. Res. 63), along with LHHS Appropriations Report Language. (The House version of the resolution [H. Con. Res. 74] passed in 2007.) As specified in the legislation, the NIH formed a trans-NIH hydrocephalus working group in June 2008 with representatives from many institutes, including NINDS, NIBIB, and NICHD. After this legislation, the NIH’s investment in hydrocephalus nearly tripled to $1.78 million in one year. “The HA is positioned at the nexus of a movement to strategically drive hydrocephalus research… It is our intent to drive and support the research agenda by directly funding hydrocephalus research.” - Former Board President, Bob Jacobsen PATHWAYS The Association continues to support research by bringing together scientists and clinicians to share insights and improve research collaboration. In 2008, the HA successfully applied for an NIH grant for the research workshop “Improving Outcomes in Hydrocephalus: Bridging the Gap between Basic Science and Clinical Management” to be held in Baltimore in September 2009. This workshop will address some of the key priorities identified in the 2005 NIH Hydrocephalus workshop “Hydrocephalus: Myths, New Facts, Clear Directions,” the results of which were published in the Journal of Neurosurgery: Pediatrics in December 2007. In 2008 we launched the new look and feel of our quarterly newsletter, which included a change to the graphics and color palette as well as the incorporation of our new logo. This was all part of a comprehensive effort to streamline attempts to reach and inform a larger audience. 2008 CONFERENCE In 2008, we also held our 10th annual National Conference on Hydrocephalus in Park City, Utah. It was a 4-day conference to provide tools and connections to address the medical, educational, and social challenges of living with hydrocephalus. The conference consisted of over 55 educational sessions in which individuals with hydrocephalus and their families had direct access to specialized medical professionals. In addition, participants were invited to interactive sessions for peer-to-peer networking. Over 500 national and international participants attended. “…Kudos to all; it was another outstanding conference from start to finish…your hard working staff did a terrific job…the affirmation from our community shows how important they (the conferences) are.” - Anonymous IN HONOR Anthony Abbene Daughter Abbey DuPan Doctor Abbot Alexandra Acevedo Amanda Akbar Matthew Alban Zara Allender Catalina Aloi Nick Altimore Chase Alvarado Mark Anderson Lara Andren Ashton Kade Ardoin Eleanor Arnold Thomas Ascherl Caleb Backus Micah Bacus John-Henry Baker Joshua Bashant Michael Basirico Joseph Batterman Brian M. Bauer Michael Bauer Nola Gracyn Bawcum Marie Bearden Lynn Beirl Nicolette Belanger Lynzee Benoit Dr. Marvin Bergenseider Madeleine Bergeson Leanne Beyer Lee Bills Zachary Borneke Warren Bowden Sarah-Beth Bowers Nancy K. Bradley Kurt Brailsford Charley Breeden Philip Brooks Cecilia Bulone Rebecca, Jim, Bryon and Joan Burness Marijke Bush Aaron Buttram Cecilia Calabi Jeffrey Chrismer Finn Clancy Thomas Clark Ryan Cochran Jack and Julie Coe Daniel Cohen Elizabeth Conner Cole Jaden Cooper Joshua Cooper William Erickson Cooper Jake Cors Reece Cotter Brooke Covington and Family Riet Cramer Nancy Crossman Ali Cryan Jennica Dabrowski Our Daughter Jordan Davidson Allison DeGrood Johnathan DelaTorre Scott DeMicco Sam Denney Bridget Grace Denning Destiny Chase Devlin Elizabeth DiPietro Claire Dixon Joe Dozier Nicholas Drubin Karen J. Dubin Mary Lou Duffy Wesley Eason Alex Edwardo Christian Eischeid Elizabeth Stanley Ellis Rachel Engelmann Mrs. Katina Engle Owen Evans-McLaughlin The Henerlau Family Sean Fank Ian Farnkopf Heather Faulkner Dr. Michael Fine Samuel Fine Josh Fineman Phyllis Fineman Kate Finlayson Zale Funston The Funston Family Samantha Garcia-Salas Emma Georgiou Brian Gibson Barbara Gillman Gisselle Gonzalez Wyatt Grimes Paul Gross Vanessa Gross Austin Hahn Zachary Halcomb Trisha Hammond Ernest Hanan Bengamin Hodges Donny Hodgkins Day Hogue Zachary Holcomb Tianna Jeflene Howell Betty Hudgins Ann Huettl Kenneth G. Hughes Craig Hundley Jacob Husson Mary Hutchcraft Cole Illions David E. Islas, III Bernie Itzen Jake Rose Jicinsky Amy Johnson Mr. and Mrs. Rick Jonas and Family Mary Stewart Jones Nile Jones Joshua Cindy and Kevin Joslyn Mathew Juette Emma Kaczor Sarah Kell John H. Kenworthy Emily Kessler Jack Klug DIRECT SUPPORT SCHOLARSHIPS One-On-One On the support front, in 2008 we were able to provide one-on-one support electronically or via telephone to more than 2,200 individuals from the United States, Canada, and other countries around the globe. In 2008 we proudly provided scholarships to elev deserving young people with hydrocephalus who are pursuing post-high school education. Website 2008 also saw the unveiling of our new website with improved functionality that makes all of our printed resources available at the touch of a button. We served over 111,000 visitors who printed over 63,000 articles, booklets, and fact sheets. Gerard Swartz Fudge Memorial Scholarships Anthony Abbene Scholarship Justin Scot Alston Memorial Scholarship Laura Beckley Barsotti Memorial Scholarship Mario J. Tocco Hydrocephalus Foundation Scholarship Morris and Rebecca Ziskind Memorial Scholarship “Thank you so very much for your help and for sending the information. Your kindness on the phone meant so much. I was feeling so scared and sad, and you really helped me.” - Anonymous PUBLICATIONS PARTNERS NETWORK PROGRAM The Hydrocephalus Association provides the following resources to individuals and families affected by hydrocephalus: The Partners Network, which is comprised of Support Group Leaders, Walk Chairs, and Advocacy Point Persons, is rapidly expanding. There are currently 17 pediatric support groups and 4 NPH support groups in 17 states across the U.S. In 2009, we look forward to considerable growth in this arena. In 2008, 23 Awareness WALKS were held aross the country. 2008 Hydrocephalus WALKS Oroville, CA Birmingham, AL San Francisco, CA Chicago, IL New Braunfels, TX Milwaukee, WI Salt Lake City, UT Cleveland, OH Denver, CO Edison, NJ Phoenix, AZ Washington, DC Albuquerque, NM Bloomsburg, PA Tampa Bay, FL Philadelphia, PA Boston, MA Graham, NC Long Island, NY Colonie, NY St. Louis, MO Louisville, KY Lenoir, NC Frank David Kovack Hannah Krempler Ariel Krinsky Lacy Krueger Antonia Kuefler Krista Lamison Isaac LeVahn Tim Lindsay Paige Linley Jordan Nicole Lionberger Mia Lopez Maureen Lorello Sam Lovick Austin Lucero Autumn Mabon Brian Madden Grace Sheila Maguire Carol Malloy Elyse and Ashley Mandel Saxon Maxe Catherine McDermott John Stephen McGhee Jacob McKenney Benjamin Methner Waylon Metts Erheart Mianan Savannah Miller Thomas Edward Mingst Janine Mohler Mom and Dad Michael Mooney Mr. and Mrs. William Moore Darma Mortimer Matthew Mulligan Brian Murphy Spencer Neff Adora F. Norris Emiliano Ortega Kenton Osborne Charley Otto Tyler Padron Madison Pardi Jack D. Parker Amanda Patrick Jake Peacock Erin Pearce Mackenzie Pembrook Gavin Scott Penkal Sarah Percell Giovanni Perez Rebekah Perkins Samuel Phelan Ida Phillips Noah Elmer Plantikow Hydrocephalus Awareness Events Florida Pennsylvania Utah Colorado Support Groups Sacramento, CA Indianapolis, IN Phoenix, AZ Salt Lake City, UT St. Louis, MO Tampa Bay, FL Edison, NJ Baltimore, MD Long Island, NY Boston, MA Seattle, WA Chicago, IL Isaac Poole Amy Poskey Ashlyn Marie Powell Charles T. Ray Siobham Reardon John and Diane Reseska Shawn Rice Hayley Roach Alexis Rocciola Giancarlo Rodriguez Guerrero, II Emily Rogers Phillip Rosenthal Hilary Rossen Amber Rowen Antonina Ruriani Elizabeth Saavedra Ben Sanchez Emerson Page Sarre Benjamin Saylor Romi Scarlett Aaron Scarpato Angie Scherer Sara Schieder Dennis Schreibeis and Family Dr. Robert Schultz Elane Schwarz James G. Sclimos Booklets About Hydrocephalus—A Book for Families (in English and Spanish) About Normal Pressure Hydrocephalus (Adult-Onset) Prenatal Hydrocephalus—A Book for Parents Hydrocephalus Diagnosed in Young to Middle-Aged Adults A Teacher’s Guide to Hydrocephalus Health-Care Transition Guide for Teens and Young Adults Directory of Pediatric Neurosurgeons Directory of Neurosurgeons for Adults Fact Sheets Primary Care Needs of Children with Hydrocephalus Learning Disabilities in Children with Hydrocephalus Hospitalization Tips Headaches and Hydrocephalus Social Skills Development in Children with Hydrocephalus Eye Problems Associated with Hydrocephalus Survival Skills for the Family Unit Durable Power of Attorney for Health Care Decisions Endoscopic Third Ventriculostomy Cerebrospinal Fluid Shunt Systems for Management of Hydrocephalus Nonverbal Learning Disorder Syndrome How to Be an Assertive Member of the Treatment Team Second Opinions College & Hydrocephalus Understanding Your Child’s Education Needs/IEP Resource Packets Colfax Selby Alexander Senanou Eric Carter Shields Brenna Smith Joe Neal Smith Tara Smoot Noelle Joy Sokolnicki Jorden Mitchell Spring Michael Stabile Agnes M. Stone Emma Stoner Jeremy Tam Maria Tatman Lucy Tatum Tayler Abbey Testa Katherine Mae Thayer Karson Palmer Thomas Matthew Thomas Odekunle Titilayo Ashlee Tracy Cheri Trieber Nicholas Trotto David Updike Salvatore Vassallo Remington Veillieux Christine Votraw Rachel Walden Sophia Walsh Sadie Waters June Webb Hannah Weil Dr. Stuart Weiss Tycen Welle Chad Whisenant Will Abigail Wood Warren Yalowitz Quinten Zalesky Donors MAJOR DONORS Robert and Sara Adler Marty Allen Sebastian Aloi Maria and Daniel Andrzejek DeAnna Backus Angela and Chris Batterman Theodore Batterman Lynn Beirl Miguel Bejar Sarah Billinghurst and Howard Solomon Bradley Blake Richard Mark Bonney Candy Bretschneider Berta Brightman Lisa and David Browdy Craig and Vicki Brown Linda Diane Burger Tina and Michael Burke Susan Cahalan-Roach Joy and Joel Campbell Abigail Collins Marylyn and Tom Conley Shawn and Teri Cooper Helen Daltoso Don Davis Erin and Steve De Haan John and Liz Devlin Richard Dickstein Nicholas and Joanne Drinkwater Randy Dueck and Jenna Stanley Gary East Sanford and Adrienne Eckerling Warwick Every-Burns Kathy and Roger Farmer Debbi Fields Mary Finlayson Pamela Finlayson Lance and Christina Funston Alicia and Alex Georgiou Carla Gigante Marty Gleason Jay and Kathryn Goemmer Elizabeth and Hilton Goldreich Glenn T. Good Adam Goodman Tom, Margo and Jessica Graham Edith Gross Paul Gross & Lori Poliski Asha and Nikhil Gupte Todd and Joni Hahn Tim and Mary Beth Harris Johnetta Heltz Roger Hudgins Cathy Humphrey Mary Hutchcraft Kimberly and Michael Illions Ervin and Beth Jackson DeCesare James Susan and Ron Kaplan Stephen and Winifred Keane Eileen and Roger Kimber John Kingsley Roger Kissin CORPORATE / FOUNDATION Martha Lee Patti and Fred Lorenzen Cathy and Dan Maccoux Christina Maldonado Joseph and Mary Maloney Amy Maynard Mark, Karney, Caitlin and Timothy Maynard J. Gordon McComb Kris McFadden Guy McKhann C. Scott McLanahan June and Ray Moser Craig Muenter Richard Nakashian Alan and Barbara Neff Marsha Nelson John and Patty Nohr Austin Noll Paul Rogers and Barrett O'Connor Chris Palochak Maureen and Marco Pardi Bruce, Cheryl and Thomas Penman Marion and Daniel Phalen Abby and Jamie Puckett Michael Rehaut Lucy and David Rich Daniele Rigamonti Darlene Rogers William Rutz Peter Scarpato Paul Schulte Joseph and Doris Segel Brad and Nicole Silver Faith and Bobby Joe Smith Thomas and Kathryn Stamey Micki Stewart Peter Sun Vanessa Taliaferro-Jones Dianne and Andrew Tannariello & Family Janet and Charles Tarino William, Kathleen and Alex Tarmann Beth and Woody Tatman Pam and Richard K. Thomas Isnoelia Trevino Debbie and Jan Van der Sanden Tessa Van Der Willigen Hildegard Vetter William and Amy Vincent Carrie and Jay Weaver Kenneth Weaver Carl and Laura Weiss Bernie Wendler Elizabeth Wilson Aizik Wolf Margaret Wood Sara Zalesky A Cut Above AAA Aesculap, Inc. The Ahn Family Foundation AIG Matching Grants Program AllianceBernstein American Express Foundation America's Charities Ameriprise Financial Employee Giving Campaign Amgen Foundation Matching Gift Bank of America Foundation, Inc. Bank of Marin Batterman Family Foundation Boehm Birth Defects Center, Inc. The Brain and Spine Center Brownstein CA Inc. Cadence Design Systems, Inc. Capital Group Companies Caring Fund CFC CFC - Global Impact CFCNCA Charles Schwab Foundation Cincinnati Children's Hospital The Clorox Company Foundation Employee Giving Campaign CN Employees' and Pensioners' Community Fund Codman, a Johnson and Johnson Co. Combined Charities Campaign Community Foundation for Southeast Michigan Community Health Charities of CA Community Shares of Minnesota Deutsche Bank Americas Foundation EBay Foundation The Elms Inn FactSet Research Systems, Inc. Fidelity Charitable Gift Fund First American Title Insurance Co. George H. Sandy Foundation Give With Liberty Employee Donations GoodSearch The Hanover Insurance Group Foundation, Inc. Hecht-Levi Foundation High Level Fitness The Home Depot Political Action Committee Hydrocephalus Foundation, Inc. IBM Employee Services Center Jewish Community Federation of Cleveland John M. and Catherine F. Thalheimer Family Charitable Foundation Johnson and Johnson JPMorgan Chase Foundation JustGive.org Kaiser Permanente Community Giving Campaign Key Foundation Kraft Foods Matching Gift Program Landscaping and Tree Service, Inc. Law Office of Maynard and Cataldo George Dorsey Harold Douville Mary Lou Duffy Laura Dunafin Nancy Ann Eich Mike Farris Teddy Fattoross Cole Thomas Fonger Francis Sidney Franklin Ira Frieder Uncle Fritz Gerard Fudge John Gilkison, Jr. Janet Gorter Robert Gossen Angel Gwak Dr. Mary Hammock Robert W. Heard Virgil Hiveley Kenneth Hughes Eldred Hulbert Eleanor Jacobs Bernadette Janus Marilyn M. Jarvi Mildred and Toge Johansson Aaron Johnson Rebecca Grace Jones John C. Kase Thomas Kelley Bessyanna Knapp Mr. and Mrs. Richard Kranz Edythe Magduff Phyllis Mancuso Samuel Adam Margolis Ida Markus Ronald and Pat McClain Ashley Kim McDaneld Francis Mello Tyler Michael Sue Middleton Patricia O. Milligan Christian Molica Eloise Moons Sally Mullen Dr. Samuel Neff Dave Newsom Gemma Marie Norkus LeVahn Family Foundation Macy's Foundation Maltbie Incorporated Marine Corps League The McGraw-Hill Companies, Inc. Medtronic Medtronic Neurologic Technologies Mentor Graphics Foundation Merck Partnership for Giving Messer Construction Co. Methodist Hospital Microsoft Giving Campaign Monarch Realty, Inc. Monsanto Fund Navesink Foundation Network For Good NPO Gateway PASCO PASCO Foundation Pfizer Foundation Matching Gift Program Pine Valley Middle School Pitkin County The Pittsburgh Foundation Prudential Foundation Matching Gift RapidForms Ronald and Pat McClain Good Samaritan Trust Rose Fin, Inc. Rudi Schulte Research Institute Sandman Family Sara Lee Foundation Seeking Techniques Advancing Research in Shunts Sinai Hospital Sophysa, USA, Inc. Spiritus Christi Tithing St. Thomas Thrift Shop SunTrust Bank Survtech Corp Tenet Healthcare Foundation The Terlecki Family Thomson West Toys R Us Tractebel North American Services U.S. Bancorp Foundation UBS United Business Media LLC United Way New York United Way of Alamance Co. United Way of Madison County, Inc. United Way Pfizer United Way Southern Nevada Verizon Foundation Wachovia Foundation Matching Gifts Program The Walmart Foundation Wellpoint Associate Giving Program Wells Fargo Community Support IN MEMORY Aurora Adler Walter Aglietti Curtis L. Allen, III Melvin R. Auch Nancy Bagsten-Collins Sog Baker Lorraine Belmont Joseph Beninati Florence Berger Rachelle Bryant-Bither Carmella Buemi Peter Caporino Joseph Carotenuto Charity Cole and Tracy ike Collins Jay Copeland Bernice Crespin Sam Cypert Sandra DeWald Diane Michele and Rachel DiCosola Carl DiPietro Ann C. Domsic Aurora Padron Irene Peckham Nathan Carl Pedersen Diana Pennell June Perkins D'Anne Quinton Liam Jon Robbins Sidney Rubenstein Charles Rubin Michael Sherrill William Sinclair Carson Smith Leonard Soranno Dr. Marvin Stern Dr. W. James Sullivan Betty Sykora Mabel Toft Anne Traneis Faith Valentino Earl Van Sickle Valerie McMahon Vincent Danelle Williams Susan Zingone 2008 Audited Financial Statements STATEMENT OF FINANCIAL POSITION STATEMENT OF ACTIVITIES as of December 31, 2008 SUPPORT AND REVENUE ASSETS Current Assets: Cash and cash equivalents Pledges receivable within one year Prepaid expenses Inventory Total Current Assets Money market funds permanently restricted Pledges receivable in two to four years Property and equipment (net of accumulated depreciation) Deposits Total Assets $925,928 94,758 17,167 12,617 $1,050,470 $80,218 30,000 20,028 4,876 $1,185,592 LIABILITIES Current Liabilities: Accounts payable and accrued expenses Lease payable, current $51,462 4,776 Restricted grants and donations Unrestricted contributions Fundraising ($466,961 revenues less $137,031 expenses) Conference fees Sale of books and publications Interest and dividends Net investment gain (loss) Other income Total Support and Revenue Long term Liabilities: Lease payable, non-current Total Liabilities 329,948 56,485 21,136 17,447 (6,379) 60 $1,171,882 EXPENSES Public support, education & advocacy Hydrocephalus conference Research Total Program Expenses Administration Fundraising Total Expenses Total Current Liabilities TOTAL $492,570 260,615 $534,641 191,453 13,864 739,958 149,354 125,522 $1,014,834 $56,238 $13,288 Change in net assets $157,048 Net assets at beginning of period $959,018 $69,526 Net assets at end of period $781,706 254,142 80,218 Fundraising 12% $1,116,066 NET ASSETS Unrestricted net assets Temporarily restricted net assets Permanently restricted net assets Total Net Assets $1,116,066 Total Net Assets and Liabilities $1,185,592 Administration 15% Celebrating 25 Years ANNUAL REPORT 2008 Programs 73% MISSION The Hydrocephalus Association’s mission is to eliminate the challenges of hydrocephalus by stimulating innovative research and providing support, education and advocacy for individuals, families and professionals dealing with hydrocephalus. OFFICERS OF THE BOARD MEDICAL ADVISORY BOARD Paul Gross, Chairman Deborah Phillips, Secretary Raymond Moser, Jr., Vice Chairman Curt Stewart, Treasurer Rick Abbott, MD Marvin Bergsneider, MD James Drake, MD Michael Egnor, MD Richard Ellenbogen, MD Ann Marie Flannery, MD Bruce Kaufman, MD John Kestle, MD Mark Luciano, MD Joseph Madsen, MD Anthony Marmarou, PhD J. P. McAllister II, PhD J. Gordon McComb, MD C. Scott McLanahan, MD David McLone, MD Joseph Piatt Jr., MD Harold Rekate, MD Marion Walker, MD Michael Williams, MD Michael Edwards, MD (emeritus) DIRECTORS David Browdy Matt Kursh Russell Fudge Craig Brown Ralph Kistler Marvin Sussman, PhD Marion Walker, MD George Breed Marc Randolph Mike Schwab Debby Buffa Hydrocephalus Association 870 Market Street, Suite 705 San Francisco, CA 94102 Telephone: (415) 732-7040 / (888) 598-3789 Fax: (415) 732-7044 www.hydroassoc.org [email protected] Celebrating 25 Years