annual report - SADS Foundation

2011
Annual Report
Dear Friends,
Dear Friends,
It is my privilege as the President of the SADS
Foundation’s Board of Directors to thank you
for your support over the last 20 years. The
work that the SADS Foundation has been able
to accomplish is nothing less than phenomenal.
With record-breaking growth, both financially
and in awareness numbers, we are poised on the
brink of greatness.
Twenty years ago a critically important
milestone in the area of inherited
arrhythmias and sudden cardiac death
in the young occurred, being the
founding of the SADS Foundation.
Since 1972 I had been seeing and
effectively treating families with the
inherited long QT syndrome and
other causes of SCD in the young, and
developing very large family pedigrees
and excellent clinical diagnostic tools, I
partnered with my University of Utah
colleague Mark Keating MD, PhD
in 1989 and his team began to do
molecular genetic analyses on members
of my large families. Within a few
years his team found the first mutation
causing Long QT syndrome and subsequently
others. With the great deal of excitement that
genetic finding generated in the medical and
news communities I thought it was time to
develop a foundation to assist the research
programs, provide support to affected families,
and to spread the word to physicians, scientists,
and the lay community about the scientific
advances in diagnosis and treatment. Thus,
with wonderful colleagues and friends David
Salisbury, partner in a major Salt Lake City Law
Firm, and Katherine Timothy who had worked
with me for a number of years doing the crucial
genealogy and contacting work in our LQTS
families, we founded the SADS Foundation.
With the discovery of this initial mutation, easier
diagnosis and early treatment were possible, and
the young lives being saved increased. The SADS
Foundation and subsequently a number of others
now save the lives of those affected by Long QT
and other channelopathies (Timothy Syndrome,
CPVT, ARVC, Short QT, etc.)
The past few
years have shown
increased awareness of Long
QT and other
SADS conditions. Television,
radio, internet,
social media are
all paying attention. The SADS
Foundation has
been recognized
by State Farm and Major League Baseball, and
has been recognized as a leader among Face Book
Causes. By using innovative and unique opportunities, more individuals are learning about the
warning signs before it is too late – thus
preventing sudden death in the young.
So now we’re asking you again for your help.
Help us continue our growth – both financially
and in awareness. Tell your friends, join the
cause, register at the SADS Foundation, give a
gift, set up a fund, ask your company to become
a partner with the SADS Foundation.
With each dollar raised, we are meeting the needs
of more and more families affected with these
potentially lethal conditions and helping them
to live and thrive despite its presence. Together,
we are not only saving lives but empowering our
SADS families to live large.
Thank you for all you have done to sustain
the work of the SADS Foundation. Working
together, we will continue to save young lives.
Warmest regards,
What an amazing 20 years it has been. We have
brought together world-leaders in the field of
channelopathies who now serve on our Board
of Directors and Scientific Advisors. We have
20 years of science, data, facts, care plans, and
other helpful tools for families, physicians
and researchers alike. We have established an
excellent, committed staff, and a volunteer base
that spans the globe. We have funded research,
and are seeing change in the awareness of Long
QT and other SADS conditions. The science
and knowledge base are built, and the SADS
Foundation is now ready to launch into the
next 20 years – raising awareness globally, saving
young lives before they are at risk of sudden
death, and seeking cures for these conditions.
Please accept our warmest appreciation for
your support over the years. You are wonderful!
Your faith in our mission and your vision have
paid off, and now we are ready to grow into
the future. Please continue and increase your
financial support of our important cause, knowing
that every dollar you spend is devoted
to saving young lives.
Thank you, with my warmest
personal regards,
G. Michael Vincent M.D.
Michael J. Ackerman, MD, PhD.
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Corporate and
Foundation
David Salisbury
Legacy Circle
Eileen and James Wilkoff
Philanthropic Fund
($1000+)
$1000+
$500-$999
Boston Scientific
Cardiac Science
Gene Dx
Independent Order of Odd Fellows
The Medtronic Foundation
Philips Medical Systems
St. Jude Medical Foundation
State Farm Mutual Automobile
Insurance Company
Transgenomic, Inc.
Utah Medical Association
Foundation
Wells Fargo (Amber Hartman)
Kelly Airey
Amy and Jeff Barry
Stuart Berger MD and Julie Biller
Kathryn and Scott Blum
Carlos and Lois Ann Bowman
Chris and Carey Burch
Mary Ann Ciciarelli
Denise and Chris Falzon
Cynthia Fisher
J. Patrick and Anne M.
Gallagher
Dr. Michael and Susan
Garcia
Mrs. Shirley Mann
Gaster
Mary Glasheen
Ferdinand and Janet
Grube
Grant Haase
Alan and Cora Harvey
Laura Wall, Carol Willingham and Cathy
Paul Israel MD
Simon at a SADS Foundation benefit concert
Traci and Derrick Jensen
in Salado, Texas on February 12, 2012. The
Dotti Johnson and William
concert was dedicated to Cathy’s son, Brett Ivan
Rusk
Anderson, who passed away in 2009 due to an
Lisa Sydney Klarin
undiagnosed SADS condition.
Amanda and Mark Koch
John and Nora Lambert
Ellen Boles
Timothy Letter
Robert Campbell MD
Dan Levy
Chuck and Renae Carr
Peter McMillan
Mrs. Sally Cleveland
Linda Cowley
Sharon Cramer
Scott Dailard
Martin Elias
Susan P. Etheridge MD and Mr.
Michael Pond
Jeremy Fotheringham MD
Kevin and Elaine Glasheen
Todd M. Gorder
Heidi Harper
Jackie Kaas Vines and Ron Vines
Sharon and Jim Lentino
Paul Levine MD
Violette Levy
Alan London MD
Jeremy Lopynski
Dax Buller of Salt Lake City, Utah with
Anthony and Cathleen Lucatuorto
his school project on SADS conditions.
Marlena and Joseph Mayer
Sheri and John Miner
Agnes and Conrad Mihalek
Ms. Lisa Olson MBA, Ph.D.
Jill Miller
Karen Onsgard and Harriet Sprague
Brooke A. Morrow
Mrs. Pam Osterhout-Batten
Rhonda Rand MD
Douglas and Angela Parker
Mary Ellen and Bob Rowan
Marilyn and Reg Parsons
Maureen and William Schulman
Kenneth and Rosalind Pearlman
Yan-Ting Shiu
Ms. Martha Post
Mr. and Mrs. Frederick Smith
Richard Radzis
Patricia and Vince Talone
John Rausch
G. Michael Vincent, MD
Ismael Ruiz
Dan and Debbie White
Larry and Margie Smith
Clifford L. and Wanda S. White
Ms. Glenda Stafford
Frank Rogers Witte
Jeffrey and Melinda Stephan
Amy and Darren Kozelsky
In Kind Gifts
Michael Ackerman, MD, PhD
Stuart Berger, MD
Robert Campbell, MD
Erin Demo, MS, CGC
Susan Etheridge, MD
Peter Fischbach, MD
Google
LeFavor Envelopes
Lorraine Press
Pat Buller Design
Silvia Priori, MD
Dan Roden, MD
Philip Saul, MD
Sugar Sync
G.Michael Vincent
XMission
Michael J. Ackerman, MD and cardiac arrest survivor, Misty Morrison.
Matching Gift Funds
Adobe Systems Incorporated
Bank of the West
CNA Surety
CRW Graphics
First Data Foundation
ITW - Illinois Tool Works
Foundation
Oracle Corporation
Western Union Foundation
Michael Ackerman MD, PhD
Jeremy Ancell
Chris Anderson MD
Jeannie Balsam
Joanna Bewick
Lisa Adams
Jennifer Allen-Balma
Mary Arends
Ann M. Aschoff
Debbie Benjamin
Joanna Bewick
Loren and Susan Brown
Kevin and Lisa Bruegge
Ana Chiaventone
Dr. Sumeet S. Chugh
Rochelle Cohen
Mark Edwards
Yasna Ericksen
Denise and Chris Falzon
Andy Golden
Thomas and Christine
Gokey
Gail and Thomas Goulart
Ms. Libbie Hough
Sandy Kawamoto
Stewart Krug
Barbara Madison
Sandy Mcgraw
Natalie Park
Lori Peachey
Pamela J Pelle
Dr. James Perry
Corinne Ruiz
Jan Smith
Trisha Stepkin
Angela Taylor
Martha Temple
Jackie Todd
Barbara Tolosky
Craig Tolosky
Melissa Tolosky
Marilyn Wadden
Louise and Chris Walker
Ms. Michele Wenhold
Bryan and Elaine Wilson
Living and
Thriving Funds
Kayla and Clay Beckman
Emily Boone
Phillip Breen
Chuck Carr Family
Lee Ciciarelli
Kathy Engh
Alyssa and Britnee Hatch
Donna Marie Kelly
Audrey Koch
Sally Layton
Annie Lucatuorto
Danny Mauriello
Mr. & Mrs. Bernard McArdle
Brandon Messing
Cache Miller
Paul and Emerita Reh
Zach Turner
Sam and Kristen Yeager
Memorial Funds
Brett Anderson
Brianna Badger
Julie Bernard
Lee Vernon Blackwell
Challis Blum
Ed Blum
Mary Elizabeth Butt
Kelly Ann Chamberlain
Jonathon R. Cowley
Cynthia Boles Dailard
Shawn DeVries
Colleen Dutko
Brian Falzon
Shirley Mann Gaster's
Children
Rob Kaas
Frank Keitch
Lucille Levine
Billy Levy
Michael London
Ryan Lopynski
Clara Maida
Tommy Marren
Sabrina Martin
Barbara Elizabeth Masters
Stephanie Mejias
Rosanna Metoyer
Justin Mark O’Meara
Victor Nigro
Ronnie Palcer
Kim Thi Le Phan
William C. Pollock
Brian Price
Windland Smith Rice
Rebecca Righeimer
Awareness
Volunteers
Carol Algernon
Jennifer Allen-Balma
Linda Anderson
Kat Andrews
Nikki Andrews
Amanda Applegate
Amber Arispe
Lounita Armstrong
Philip Asher
Alphonso Baker
Alyssa Balsamello
Megan Baroska
Gail Bartok
Lisa Beckman
Jaime Bellomy
Ken Benjamin
Rhonda Bernstein
Joanna Bewick
Jodi Bewick
Patty Blakeley
Stormie Blue
Miranda Bonney
Mary Ellen Bowlby
Karen Boyd
Holly Brandon
Continued on page 4
SADS Annual Report 2011
www.StopSADS.org
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Advocacy
Volunteers
Thomas Sutch
Patricia Wilson
Mary Yeast
Cathy and Brian Zbanek
2
Jeanine Breen
Paula Broullire
Loren Brown
Kevin Bruegge
Jessica Buffington
Mary Burch
Barbara Butcher
Gina Byrnes
Marlon Cabrera
Cynthia Canton
Ingrid Carlson
Allie Carr
Renae Carr
Richard Carr
Judith Carter
Allison Dimsdale
Eileen Dirrane
Celia Douthit
Genevie Echols
Kevin Echols
Holly Eckstein
Nikki Egan
Lauren Eicher
Sandra Everett
Melissa Falness
Shannyn Fasbender
Les Feldman
Stephanie Felgoise
Stephanie Festian
Bethany Finch
Mayda Ruiz: died suddenly at age 36
of an undiagnosed SADS condition.
Chris Cason
Mark Challender
Amanda Chesser
Sumeet Chugh
Nora Cochran
Shelli Cokley
Diane Conjerti
Vanessa Connell
Paige Cooper
June Corley
Angela Courchesne
Linda Cowley
Kila Cox
Robert Crockett
Tracy Cronin
Lisa Crua-Nelson
Vince Cuellar
Melanie Cuison
Tracy Curtis
Sandy Cusack
Jennifer Dalpe
Yvette Dancel-Gonzalez
Teresa Dangerfield
Rich Darago
Cristina Darr
Melani de la Vega
Katherine DeBiase
Toni Delaney
Linda Dellinger
Linette Derminer
Sue Dietrich
Alicia Floor
Debbie Fornay
Debbie Fournier
Lorelle Fredrickson
Anna Froeder
Sharon Gainsburg
Sally Genolio
Deborah Gillen
Andy Golden
Cari Gorman
Tammy Grantz
Courtney Greene
Lisa Grosholz
Alejandra Guerchicoff
Donna Guillory
Judy Guzman
Myia Hackett
Pamela Haines
Jennifer Hanks
George Harding
Sharron Harper
Carol Harris
Shauna Hatch
Emily Hatfield
Trish Headrick
Marthann Heil
Jackie Henderson
Lacey Henry
Susan Herron
Krista Heusner
Lucy Hewitt
Lynn Hicks
Ashley Hickson
Sherry Hines
Jessica Hinkle
Carol Hitt
Mary Hollingshead
Lauree Holtan
Stephanie Hooper
Sue Horn
Betsy Howard
Nicole Huck
Danielle Huckins
Leighanne Hudson
Angela Huffman
Christine Hughes
Tim Hunley
Linda Ipri
Bharat Jaishy
Bishar Jenkins
Dawn Jerson
Chris Joffe
Joan Johnson
Jodi Katz
Debra Kaufman
Sandy Kawamoto
Patricia Keeton
Angela Keller
Linda Khalil
Shannon Kiss
Rebecca Knowles
Amanda Koch
Cheryl Komenda
Julianna Kopakowski
Nadia Kotska
Peter Kowey
Robin Kruse
Barb Krzenski
Daniel Lacey
Nora Lambert
Julie Lankey-Smallwood
Christine LaPiccirella
Darren Larkin
Robert Lawler
Christine LeBlanc
Corinne Leto
Darlene Lewis-Weaver
Brandy Locke
Lauren Logan
Annie Lucatuorto
Anthony Lucatuorto
Kathy Lucatuorto
Katherine Lynch
Tami Madera
Missy Madigan
Barbara Madison
Kathleen Maguire
Elissa Mandish
Diana Marek
Nicole Matthis
Barbara Mattison
Steevan Mauriello
Morgan McArthur
Tracy McArthur
April McCloud
Erin McGee
Sandy Mcgraw
Theresa McKinley
Patricia McLaughlin
Debbie Meissner
Karen Messing
Laura Meyers
Andy Miller
The Blue Bird Café in Nashville, TN hosted a SADS Foundation
benefit concert on August 18, 2011 featuring the talented Carl
Jackson. The concert was dedicated to Rob Kaas who passed
away in 2005 due to an undiagnosed SADS condition.”
Evelyn Miller
Kaitlyn Moehlman
Mike Monell
Brandi Morey
Arthur Moss
Deborah Mrizinski
Sheila Mueller
Angela Muhlbach
Mercedes Mulvey
Jennifer Newlin-Albers
Andrea Nichols
Sheri Nienburg
Carolyn Nitcholas
Kathleen O'Connor
Agnes Oder
Edna Oder
Brittany O'Hare
Laura O'Neill
Lisa Orazietti
Maria Ortiz
Angie Palcer
Karla Palmer
Lynn Palmer
Leann Paul
Lavita Payton
Pamela Pelle
Barbara Pereyra
Dawn Perry
Karen Peters
Marsha Peterson
Iva Petrosino
Ed Portley
Jodi Pugsley
Debbie Purvis
Stephanie Quatinetz
Amanda Rago
Betty Ramos
Diane Raynor
Alicia Reina
Donald Reitz
Dorothy Renner
Janet Riepe
Rebecca Robinson
Kari Roehl
Cari Rothenhoefer
Barbara Roy
Corinne Ruiz
Tinease Rutledge
Diane Sabanos
Angelica Salisas
Sandra Sands
Charity Saunders
Jessica Schleede
Sara Schoepke
Maureen Schulman
Rachelle Scott
Dana Sheffield
Barbara Elizabeth
Masters:
10/23/72- 7/22/12
Brandon Sheldon
Meaghan Sherwood
Peggy Simmons
David Sipes
Anissa Smith
Jan Smith
Marissa Smith
Karen Smoots
Troy Smrekar
Dianne Spittler
Dick Stafford
Trisha Stepkin
John Stiles
Jennifer Still
Susan Strauss
Lori Stuewe
Brian Sutch
Jill Sutton
Claudia Tambone
Angela Taylor
Brooke Taylor
Ladonna Tecumseh
Martha Temple
Laura Tewes
Alma Thomas
Fred Thompson
Kandace Thompson
Kelly Thompson
Crystal Tichnell
Barbara Tiger
Bob Timm
Barbara Tolosky
Craig Tolosky
Melissa Tolosky
Erin Torres
Greg Totero
Patricia Totero
Cynthia Trotter
Jane Tummonds
Patricia Valdovinos
Sarah VanMater
Sarah Vick
Jenna Viker Stewart
Allison Vogel
Cynthia Wallach
Carol Walters
Catherine Warren
Cheryl Weigle
Penney Weinheimer
Lori Weiss
Caroline Wenhold
Michele Wenhold
Samantha Wilder
Brenda Wilkin
Tracy Wilky
Doris Will
Bob Williams
Carol Williamson
Jennifer Winter
Melissa Ybarra
Karen Zilinski
Patricia Zmeskal
SADS Annual Report 2011
www.StopSADS.org
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5/3/12 3:58 PM
Volunteer Events
1st Annual Texas Hold 'Em
Tournament and Benefit Dinner
- CA (Karie Salazar)
Abbey Wambach Memorial Events
- NC, SC (The Wambach Families)
Barmitzvah Celebration - TN
(Brandon Messing)
Brayden's Buddy Golf Tournament AZ (Claudia and Bryan Tambone)
Brian Anderson Memorial Run - NJ
(Diane Anderson)
Brittany’s Trees - IL (Jim Guthrie
Heidi Owen and her two sons are
living and thriving with LQTS
in Stewartville, MN where Heidi
ran the Medtronic Global Heroes
Marathon in October of 2011.
and the Valene Family)
Buono Vino Wine Tasting - NJ
(Laura Verniero)
Cache Miller's Birthday Celebration
- UT (Melissa and Eric Miller)
Carl Jackson Benefit Concert at the
Bluebird Café - GA (Jackie KaasVines)
Celebrate Wayne and Conquer
SADS - GA (Shannon Kiss)
Christie’s Heartoberfest - NY (Craig
& Barbara Tolosky)
Climb to Conquer SADS - Mt.
Rainier, WA
Dress Down Day - Bueche's Food
World - MI (Employees)
Girl's (& Guys) Night Out - CA
(Jeannie Balsam in memory of
Rebecca Righeimer)
Hawthorne Elementary Dress Down
Day - NY (the McArdle’s)
Joseph Smith Memorial Building
Volunteer Luncheon - UT (Renee
and Jack McLelland)
Keith Young Memorial 5K Run WY (The Young Family)
Kelsey's Kare Day - FL (Kelsey
Rancourt)
Layton Oktoberfest - CO (Bill &
Sally Layton)
Madison Chesser Fundraiser (FL)
Marathon Participation for Lee
Ciciarelli - CA (Omar Garriott)
Medtronic Global Heroes Marathon
Quilt Raffle - GA (Linda Dillinger)
Quilt Raffle in memory of Abbey
Wambach - NC (Dianne
Henderson)
Run for Ryan - VA (Erin Lopynski)
Ryan Weidler Golf Tournament - PA
(Carol Weidler)
Saratoga Springs Day at the Races
- NY (Tolosky Family)
Scarves for SADS - MI (Alice Smith)
Schulman 50th Anniversary Party
- NY (Maureen and William
Schulman)
Shelton School Jump-a-thon - TX
(Kathy Martin & Betty Glasheen)
Thalheimer Family Fun Day - GA
(Ellen Thalheimer)
Memorial Funds
Therese Righeimer
Mayda Ruiz
Race Salazar
Wayne Sawyer
Kerry Ann Schulman
Ryan Sherwood
Casey Shockley
Courtney Renee
Sizelove
Continued from page 2
Stephen Smith
Jesse Smith
Andrew Stafford
Shevaun Stapp
Christie Tolosky
Brittany Valene
Justin Viker
Abigail Wambach
Tommy Marren Beef and Beer - PA
(Jennifer Marren)
“Tri” for Abbey Triathlon - NC (Joe
Wambach)
Walk for SADS Awareness - NM
(Ricky Trietley and family)
Weekend Scrapbooking Retreat NH (Cyndie and Todd Baker)
Where’s Bob? - USA (Bob DeVries)
Thanks to our Medical
Education Speakers in
2011
Michael Ackerman, MD, PhD
Stuart Berger, MD
Robert Campbell, MD
Dawood Darbar, MD
Erin Demo, MS, CGC
Susan Etheridge, MD
Frank Fish, MD
Peter Fischbach, MD
Jackie Henderson, RN
Prince Kannankeril, MD
Silvia Priori, MD
Dan Roden, MD
Philip Saul, MD
Karen Smoots, RN
G.Michael Vincent
Ryan Weidler
Keith Young
* For complete
listing visit
www.StopSADS.org
Thanks to our
Medical Education
Hosts in 2011
Brooke Army Medical Center, San
Antonio, TX
Children’s Healthcare of Atlanta, GA
Christus Santa Rosa, San Antonio,
TX
Community College of PA
(Philadelphia District School
Nurses), Philadelphia, PA
Dell Children’s Hospital, Austin, TX
Intermountain Healthcare, UT
Montefiore Medical Center, NY, NY
New York Presbyterian Hospital,
NY, NY
University of TX Health Science
Center, San Antonio, TX
Vanderbilt University, Nashville, TN
Financial Statement 2011
Expenses
Earned Income
Revenue and Support
In-Kind Donations
Education............................$200,488
Support...............................$259,543
$800
Volunteer.............................. $13,926
$700
Advocacy.............................. $28,150
$600
Awareness............................$155,936
$500
TOTAL
$781,120
Individual Contributions
Foundation and Corporate Donations
$11,105
$117,438
TOTAL
$569,944
$1,262
$4,349
$438,033
Total Program Expenses.........$658,043
Management and General........ $23,997
Fundraising..........................$163,859
$400
$398,936
$300
$200
$214,544
$100
Total Expenses in 2011...... $845,899
$0
2011
$165,397
2010
SADS Annual Report 2011
www.StopSADS.org
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