Embed Size (px)
Citation preview
To learn more about some of the exciting projects FSR is currently
involved in, please see the articles on page 2: Patient Engagement
Tools, Patient Registry, and FSR’s New Website.
NEWSLETTERBOARD
FOUNDATION FOR SARCOIDOSIS RESEARCHSpring 2013
The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for patients with this disease.
BOARD OF DIRECTORS Andrea Wilson President & Co-FounderReading Wilson Treasurer & Co-FounderLakeshore Sport & FitnessKirk Allen Sloan Valve CompanyAnjan Chatterji, MBA, D.D., LL.M Foley & Lardner LLPDaniel Culver, DO FCCPCleveland ClinicLouie Hondros, MDRush University Medical CenterYvonne JamesSarcoidosis Foundation of WV, Inc.Karen LambrosPatient AdvocateCraig LipsetPfizer, Inc.
McGhee Williams OsseBurrell CommunicationsSusan PearlstinePearlstine Family CompaniesLeslie Serchuck, MDChildren’s Hospital of Philadelphia
SCIENTIFIC ADVISORY BOARD Robert Baughman, MD University of CincinnatiDaniel Culver, D.O.Cleveland ClinicWonder Drake, MD Vanderbilt UniversityAndrew Fontenot, MD University of ColoradoJoe “Skip” Garcia, MD University of Illinois ChicagoMarc Judson, MD Albany Medical CenterCraig Lipset, MPH Pfizer, Inc.Lisa Maier, MD, FCCP National Jewish HealthDavid Moller, MD Johns Hopkins Asthma and Allergy CenterAdam Morgenthau, MD Mt. Sinai School of MedicineMilton Rossman, MD University of PennsylvaniaLeslie Serchuck, MD Children’s Hospital of PhiladelphiaBarney Stern, MD University of Maryland Medical Center
Provide Comprehensive Information and ResourcesFSR works to infuse the public and patients with knowledge, recognizing that educated, informed people become empowered.
We envision our role as “the hub of all things sarcoidosis” enabling various user groups to have ease of access to information, resources, and HOPE. Stay tuned in the coming months for new resources in each of these areas.
As spring in Chicago approaches, FSR is ready to take our mission to the next level. With the launch of a new giving level established by Marvin and Harlene Wool, and the rollout of an innovative model for achieving our goals, FSR is poised and committed to pushing sarcoidosis research forward to make real impacts for patients. Our new approach seeks to:
Pave the Sarcoidosis Research HighwayMajor gaps exist in sarcoidosis research – if we can work to help fill those, it will ignite the efforts of others to push research further. The end result — sarcoidosis becomes an “accessible” disease for others to invest their research dollars, leading to accelerated solutions.
Stimulate Sarcoidosis Research InvestmentFSR supports projects and builds collaborations to bridge gaps between research and product commercialization. Our efforts will include moving medicines that will impact sarcoidosis off the shelf and into the clinic.
GINGER SPITZER
FSR – The Hub of All Things SarcoidosisA MESSAGE FROM FSR’S EXECUTIVE DIRECTOR
Marvin & Harlene Wool Giving Society Established
FSR is pleased to announce a gift of $500,000 from Marvin and Harlene Wool. The Wools’ generous donation, the largest to date in the Foundation’s history, will establish the Marvin and Harlene Wool Giving Society, a new level of giving that will advance FSR’s ability to invest in large collaborative projects strategically designed
to push sarcoidosis research forward into uncharted, promising territories.
“FSR understands that real people’s lives depend on rapid advancements in medical research and we are happy to support their efforts.” ~Marvin and Harlene Wool
FSR is exceptionally grateful to the Wools for the opportunity their gift affords us to launch a new model designed to accelerate sarcoidosis research. FSR’s new model will support medical research by employing strategic use of capital and collaboration to move promising therapies quickly from the laboratory to the patient, utilizing all stakeholders.
We hope you are all as excited and energized to move forward as we are. Please contact us if you would like to discuss investing in promising projects that could significantly impact the field of sarcoidosis research.
FSR co-founders Andrea and Reading Wilson with Marvin and Harlene Wool
RESOURCES FSR’s New Website
As we grow and strengthen our fight to increase strategic research leading to a cure, and as we educate patients and others about sarcoidosis, we’ve rebuilt our website to make it easier to share information and resources. A more navigable site with additional resources, better tools, and a new visual design informs and links users to the resources and initiatives we support, and to all news in the world of sarcoidosis research.
Learn about the latest news on research and events to Help Win the Fight Against Sarcoidosis, and find the following current and upcoming tools at www.stopsarcoidosis.org:
• Physicians’ Treatment Protocol• Support Group Finder • Clinical Trial Finder• Clinical Trial Connector - Sign up for
Interest• Physicians’ Directory• Patient Registry• Disease Information Brochures• Peer-to-Peer Patient Interaction
Patient Engagement
Patients are not only the reason for our mission, but are absolutely the KEY to achieving it. Informed, engaged patients are CRITICAL to breakthroughs in disease research. FSR helps patients and their families understand the fundamental value they bring to this fight for a cure by educating and connecting patients to the many opportunities to be an engaged participant in the sarcoidosis research field. They themselves hold critical information to uncover vital research findings. FSR educates and informs on ways patients can make their information available to clinical researchers in a meaningful way, and specifically involves patients directly in medical breakthroughs.
FSR encourages patients to PARTICIPATE in the advancements of sarcoidosis research. We educate and connect patients, physicians, and other stakeholders.
EVENTS
April is Sarcoidosis Awareness Month! Community fundraisers and awareness events are happening all over the country. Attend an event in your area, or contact us at [email protected] for information on hosting an event! Saturday, April 20, 2013Nationwide Sarcoidosis Candlelight VigilContact a support group in your area to participate!
Saturday, April 20, 2013 Sarcoidosis Gospel Musical In Memory of Sharon Bradwell-ReddickQuincy, FLEmail: [email protected]
Saturday, April 27, 2013Shanetta’s Sarcoidosis Awareness WalkMichigan City, INEmail: [email protected]
Saturday, April 27, 2013K.I.S.S.ing Cleo for Life Birthday Gala/FundraiserCharlotte, NCwww.kissingcleo4life.com
Saturday, May 18, 2013American Thoracic Society Public Advisory Roundtable FREE Patient-and-Family ForumLoews Philadelphia Hotel, Philadelphia, PA
10am-12:30pm: Meet-the-Expert Forum The latest in research, clinical trials, and clinical care with experts on many different lung disorders.
1pm-4pm: Breathing Better with the ATS Panel discussion featuring prominent pulmonologists on innovations in lung health.
To indicate your interest in the ATS Patient Forum, please RSVP to [email protected] no later than May 3, 2013.
Saturday, June 1, 2013Run the Ridge - Sarcoid TeamBurr Ridge, ILEmail: [email protected]
Saturday, June 22, 2013Chad Hammond Memorial Golf OutingFreeport, PAEmail: [email protected]
Saturday, June 29, 20132nd Annual Deloris D. Mayo WalkVirginia Beach, VAwww.facebook.com/DelorisDMayoWalkFor Sarcoidosis
Saturday, July 20, 2013Philip L. Orkin Golf ClassicSussex, WIwww.targetsarcoid.com/events/
FSR SARC Patient Registry Our strategy in advancing research is patient-centered – meaning that we recognize the SINGLE GOAL of what we do is to accelerate therapies and ultimately a cure to reach the PATIENT. FSR will address the major gaps in the sarcoidosis research field that need to be filled to ensure a swift, clear pathway to a cure. One major gap blocking the advancement of sarcoidosis research is a lack of PATIENT DATA critical to research. Currently there is no repository to collect a large sampling of sarcoidosis patient data which is absolutely essential to researchers! FSR is leading the creation of a state-of-the-art patient registry: FSR-S.A.R.C. (Sarcoidosis Advanced Registry Cures). By registering on the FSR-SARC patient registry, patients can be actively engaged in the movement to find therapies and a cure for the disease. The project will launch this spring and be accessible via the FSR website.
Participants at the Deloris D. Mayo Walk in 2012
K.I.S.S.
THANK YOUThe Marvin and Harlene Wool Giving Society - $500,000Marvin and Harlene Wool $35,000AnonymousPfizer Inc. $10,000 to $24,999Cedar Street FoundationJames and Kathy KubikMorgan Stanley FoundationJerome and Joan Serchuck Sloan Valve CompanyReading and Andrea Wilson $5,000 to $9,999Arthur and Molly BondAmye CarriganFoley & Lardner LLPFred Fischer and Heather McWilliamsNicholas and Marion Madonna FoundationFrantz and McGhee OsseSusan PearlstineLeslie SerchuckCathy Wick* $2,500 to $4,999Graham and Brooke AllenAt PropertiesBurrell CommunicationsChicago Board of Trade FoundationRobert and Linda FinkelMichael and Kelly GoldenBrian and Carla HahnRandy Hall and Freda C. Lewis-HallLouie and Barb HondrosJeff JohnsonTimothy and Dena KrenzienSharon D. Mayo-Taylor*William and Karalynn McDermottAndy and Pam McGaanPatrick and Suzy NashPatrick J. Nash Jr. and Sara NashJon Orkin*Saddle & Cycle Club*Margaret SchellMarzena Steigerwald*University of Illinois Hospital &
Health Services SystemDenise Wool
$1,000 to $2,499Robert Acerrano*Advantage Packaging, Inc.Affordable Moving Co.Jim AllenCharles S. AllenAmeriprise Financial Services, Inc.James and Leslie AnixterAnonymousTony and Robin ArmourHamid and Vimla BandCurtis BehrentStephen and Cynthia BodineMark and Jamie BradyBranca Inc.Chartwell Ins.Richard ClappWilliam CondonShawn Donnelley and Christopher M. KellyGeorge P. Edmonds Jr. and Sally EdmondsWilliam EgglestonJ. Shannon ElliottEnterprise Holdings FoundationJennifer Foronjy*James and Theresa FredrickRuss GenetSusan GeorgesCarol HayesAnne HeekinGreg Jagmin and Brian GravesJudith JohnsonCraig and Shani LipsetLisa M. Dietlin & AssociatesDerreck LyonsBayard and Hilary MaybankRoger J. McEniryTimothy and Holly McManusAmanda Nigro*Omar Medical Supply Richard PersaudPEW Charitable TrustsDavid and Cindy PolayesSusan RamirezMichael RechtinKim ReddingAntonio and Tanika SandridgeElizabeth ScarlettMark SerchuckJohn and Joan Siff
Andrew and Karen SlimmonRutledge Smith and Katie PeaseFrank and Barbara Van HusenWalter Reed Medical CenterDorothy Williams
$500 to $999Leo AckerKirk and Amy AllenAllstate Giving CampaignAmerican Technical Publishers, Inc.George AzizAllison BaconKirk and Katherine BaldwinBank of America United Way
Giving CampaignChris and Katie BarberBetsy BarnesGary and Marci BarthRobert BaxterThomas BeakeDavid W. and Cary BomierDavid and Betsy BrintNathan and Joann BrownNicholas CapuanoAntonio CarchediRobert Carrara Jr.Benjamin and ChereskinAnnmarie CheresoFrancis and Mary ConnollyDan CulverRichard B. DanielBob and Julie DeisingerSal and Jennifer DellomoJeanne DouglassMargott Meg DrewJohn and Jenny EbeidHoward EglitMichael ElkowBeverly ElledgeNancy EvansHoward and Wendy FelixCraig FreundSteven and Cassie GavinStephen and Shery GibbonsCheryl L. GloverRoslyn GordonGlenn and Patricia HankinsJohn and Tammy Hoeksema
Issam HurmizStephanie HurstPat HuttenInternational Business &
Technical Consultants, Inc.Scott IrvineNihal and Imad IsaacAndrew and Cindy KalnowThomas and Pascale KichlerDavid and Cynthia KistenbrokerTim KollarWayne M. Kwiat Sr.Anthony and Manal LavaccaJames C. and Edith LeeAneesh LeleMichael and Maureen LevinColleen LurieTom and Grace MaguireKari B. MarshTim and Lorelei McDermottMary McelhattonMarc McKenneyDale McKenzieBernie McLaughlinJohn and Madonna MerrittSteven and Alice MinyardJoe and Sherry MoawadWilliam and Robin MooreChristopher and Elizabeth NashDavid and Kristi NuelleMary OkolisanElisabeth PayneDannielle PearsonDaniel PierroSteven PopeBill and Peggy RametteGeoffrey and Nancy RauschJames RaymerVanessa ReinstatlerKaren ReynoldsMichael H. RiesDavid and Cherelyn RiesmeyerJohn and Josephine RinaldiDenise RobinetteAnthony and Amy RobyEd and Nancy RossEdward S. and Susie RowlandLloyd Schoen and Jackie JamesSentara Health Foundation
Ketan ShahCheryl SimsGeorge E. SinnottSteve and Dawn SmithAlan SmithAnton and Martha SteigerwaldJonathon Thomas and Wendy PawelekKaren ThorneMichael and Joan UlrichUnited Way of Central & Northeastern
ConnecticutUnited Way of Southeastern
PennsylvaniaUnited Way of Central New MexicoErik and Annmarie VecchioneChip and Anne von WeiseVon Weise Associates LLCMichael WebbWedner Family FoundationHeyward and Teresa WellsWells Fargo Community
Support CampaignBill and Susan White
$250 to $499Kenneth and Diana AdamsMartin and Kate BegienWayne and Arlene BennettMary BergoniaMelissa J. Black*Mary Jane Borg*Will and Emanuela CarneyChitown CabledawgnDiamonds*John Davis and Mary GootjesGilles and Neeta DemeulenaerePaul and Catherine EmbreeMargot HumphreyThe Liberty Basketball Club, Inc*Lance and Megan LipsetStacey Mans*Paul and Michal MillerCarlton MitchellDoug and Amy RemboldtLouis RoitblatJohn ShermanRivka Sherman-GoldSteven and Joanne SnyderJohn and Julene StellatoRodney Williams
* Denotes Third Party Fundraisers
K.I.S.S. Chicago 2013 raised $121,000 to support sarcoidosis research and advance the core of FSR’s mission: to find a cure for this disease. Thanks to FSR’s sponsors, Host Committee, 300 attendees, and 40+ volunteers who supported this event! With your help, FSR “Rocked the Casbah!” A special heart-felt thanks to our guests of honor: sarcoidosis patients who took to the stage to share their inspirations with us.
K.I.S.S. sponsors included Pfizer, Sloan Valve Company, Foley & Lardner LLP, The Nash Family, Burrell Communications, University of Illinois Hospital & Health Sciences System, @properties, Lakeshore Sport & Fitness, SPLASH, a Chicago Sun-Times Publication, NBC - 5 Chicago, Real Russian Vodka, Beck’s Sapphire Beer, and Wirtz Beverage Company.
KISS 2013 HOST COMMITTEE Nate BerkusBrooke & John BeshaiLinda & Robert FinkelCarla & Brian HahnAnne HeekinBarb & Louie HondrosKarrie & Bill McDermottTéa LeoniGreg JagminJeff JohnsonDena & Timothy Krenzien
Karen “Duff” LambrosPam & Andy McGaanHeather McWilliams & Fred FischerMcGhee & Frantz OsseMichael RiesKaren RussellKaren & Andrew SlimmonKatie & Rutledge SmithJulie & Larry WertAndrea & Reading Wilson
Andrea Wilson with Mindy the Monkey
Thank You to our Donors!FSR’s work is made possible through the generosity of a growing number of supporters that share our goals and objectives. We are tremendously grateful to the individuals, corporations, and private foundations who have made gifts or hosted fundraisers in support of our mission. This list recognizes gifts of $250 or more received from January 1, 2012 to February 28, 2013.
FSR Rocked the Casbah!
FOUNDATION FOR SARCOIDOSIS RESEARCH
1820 W. Webster Ave., Suite 304Chicago, IL 60614Phone: (866) 358.KISS (5477)www.stopsarcoidosis.org
Like us on Facebook!www.facebook.com/stopsarcoidosis
NonprofitOrganization U.S. Postage
PAIDChicago, IL
Permit No. 6405
Have You Seen Our New Website? Visit www.stopsarcoidosis.org!
Newsletter printing generously provided by Carqueville, a Consolidated Graphics Company.
Become a Monthly Giver!
Another new feature on the FSR website is our monthly giving program. Monthly gifts provide FSR with regular and reliable income, eliminate unnecessary appeals and ensure more of each donation goes directly to our programs and services. We hope you will consider setting up a monthly gift. You can even designate your gift in memory or in honor of someone you love.
Thanks to our first online monthly giver: Sara Bennett who set up a monthly gift in honor of her sister Nancy Evans (right).
Thank you for your interest in FSR! We’re committed to providing information in our newsletter to help you
stay connected with our work. If you have ideas on how we can do that better, please send an email to:
FEEDBACK
