Ice Bucket Challenge – What Happened and Where Are We Now?

Investment advisory services are offered through CliftonLarsonAllen Wealth Advisors, LLC, an SEC-registered investment advisor. | ©2018 CliftonLarsonAllen LLP • Overview ALS • • • York Yankee who had the diseasehad YankeewhoYork New famed after Disease Gehrig’s called Lou Often year each ALS with diagnosed are in United States the people 6,000 A overlittle No cure movement muscle control and initiate the brain and ability spinal the patient cord;a loses to in cells nerve affects that disease neurodegenerative Lateral Amyotrophic progressive progressive a − Sclerosis 2 ©2018 CliftonLarsonAllen LLP • The ALS Association • • Signature Signature independent chaptersand 39of a networkNationwide level awareness, promote services, patient and research for money raise to 1985 in Established national national office office fundraising fundraising event is “Walk to Defeat ALS” Defeat is to “Walk event and advocate at state and federalstate at and advocate 3 ©2018 CliftonLarsonAllen LLP • Crowdraising • • • Now widespread audience than traditional broadermeansReachesrallying by supporters platforms media social via funding traditional approachesStreamlines online effort collective through Fundraising – Projected to be a $90 a be to Projected – What is it? is What - $96 billion industry by 2025 by industry billion $96 4 ©2018 CliftonLarsonAllen LLP • Ice Bucket Challenge • • • Caused a nationwide Caused nationwide a phenomenon participation fuel helped involvement celebrity Widespread Facebook, to posted were challenge of each Videos 2014 July in started sensation viral Organic, Twitter, Twitter, and You Tube You and 5 ©2018 CliftonLarsonAllen LLP • IBC Results • • • over $18 million in 2014 in million $18 over to 2013 in million $5.4 over from increased donations Chapter 19 August week, onein came million) funding ($66IBC of half than More $220million raised worldwide Over 29July (between $115million raised at the ALSAssociation National office - 25 - September 15)September – Unprecedented Fundraising 6 ©2018 CliftonLarsonAllen LLP • IBC Results • • of donations of 84 percent for accountednational 2014,in but chapters, through came donations virtually all 2013,In Association the for donors million 2.5 new Represented States United in the people million 15 − Participation participated participated — roughly five percent of the population the of percent five roughly 7 ©2018 CliftonLarsonAllen LLP Web Traffic IBC Results Wikipedia Searches Wikipedia • • • • • In August 2014, 2.89 million searches, an 18- an searches, million 2.89 2014, August In 2013 January Between million4.5 visitsAug on 20; 2014 August In Typicallydaily 17,500 visits − – 30 million visits30 IncreasedTraffic Internet - July 2014, an average of only 163,300 times per month month per times 163,300 only of average an 2014, July of those were new visits new were those of 83 percent fold increase increase fold 8 ©2018 CliftonLarsonAllen LLP • Worked What • • • Figured out how one time successful event could maintain could maintain time successful oneand eventfunding howawareness Figured out way along adjusted and Learned transparent Stayed Challenge Bucket Ice embraced Association ALS 9 ©2018 CliftonLarsonAllen LLP • Factors for Success • • • Sheer luck hook Compelling Philanthropy Community o o Facebook Facebook cycle News – – connections video video helping, not just giving just not helping, – Pouring cold ice on head! ice on Pouring cold f ad 10 ©2018 CliftonLarsonAllen LLP • Media Coverage • • • Critical sentiment was not directed towards ALS Association Association ALS towards directed not was Critical sentiment cause the to donation or ALS of awareness necessitate not does challenge the e.g media, in social sentiment negative reflected sentiment negative Some neutral largely was Coverage Traditional mediafollowedsocialmedia ., ., participation in in participation 11 ©2018 CliftonLarsonAllen LLP Some negative feedback during and after IBC: the after and during feedback negative Some Backlash • • • • • • We don’t spend enough on research, or we don’t spend it fast enough fast it spend don’t we or research, on enough spend don’t We now elsewhere donate won’t Donors people more help that charities to going served better Money cells Stem Anderson) (Pam testing Animal water of waste a was IBC claimed some West, in the drought Given – Cincinnati archdioceseCincinnati 12 ©2018 CliftonLarsonAllen LLP • Handled Had Others How • Different types of missions: of missions: types Different time short such in muchthis raised organization an has before never relief, emergency disaster in engaged charities from Aside o o are in need of a cure for ALS, which could take years take could which ALS, for cure a of in need are population a patients living of theirAssociation servesand with families ALSALS who disaster a to response in shelter and water food, like things basic of need immediate in populations serve Army Salvation and Cross RedAmerican the like Organizations 13 ©2018 CliftonLarsonAllen LLP • Addressing • • charity watchdogs donein similar situations perspectives of a from variety the situation Analyzing policymakers, community, patient the public, the from expectations meet to path careful a Walking would be engaging a number stakeholders of and transparencyto The was Association talking committed goodProviding how on points and from the individual chaptersindividual the from and -- Expectations to considering what other ALS organizations are currently doing currently are organizations ALS other what considering to -- to seeking counsel from key influencers influencers key from counsel seeking to – sitting on the money was not an option an not was money the on sitting – from what other organizations have have organizations other what from – to speaking with the speakingto with 14 ©2018 CliftonLarsonAllen LLP 15 ©2018 CliftonLarsonAllen LLP • UsingIBCfunds the • • • $6.7 million was spent on research research on spent was million $6.7 research $96 than more committed have IBC, we Since Additional spending supportto careservice and advocacy as efforts well research is million $18 nearly which of annually, million $40 almost spending now are We IBC, annual to the forbudget Prior national national o ffice million to our mission,ourmillionincluding to million$84 to was approximatelywas million, $21which of 16 ©2018 CliftonLarsonAllen LLP IBC funding IBC funding advancedhas scientific research Has it • • • ALS genes, SOD1 and C9orf72and SOD1 genes, ALS common funding, possible bymost IBC antisense drugstwohave targeting developedthe made initiative strategic research major a Collaborative, Neuro the from Researchers potential translating therapeutic insights ALS newforinto the and CENTAURII phase Our investment into ALS clinical trials has increased,such as the to disease to that contribute genes common the most Scientists discoverednewfour ALS genes since the IBC, including which NEK1,ranks among Helped ? Nuedexta phaseII clinical trials, acceleratingprogressand – all all Association ALSfunded by The Amylyx Pharmaceuticals 17 ©2018 CliftonLarsonAllen LLP • Has it Care services have expanded expanded have services Care – – Prior to IBC, we only funded 34 CTC’s at CTC’sannually at only funded 34$12.5KIBC, we to Prior Recognized Treatment Centers at $5K annually We are now funding 58 Certified Treatment Centers at $25Kannually and 20 Helped ? 18 ©2018 CliftonLarsonAllen LLP • Has it Advocacy – – – process development drug the of speed and predictability, efficiency, the increase to in tandem The federal FDA guidance, when finalized, and ALS Patient FocusedGuidance will work comprehensive The ALS guidance by done The FDA’s work builds on the Drugs for Treatment – Developing Sclerosis: Lateral Amyotrophic its DRAFT announced FDA 2018, In February Helped ALS Patient ALS ? Guidance for Industry Guidance for - Focused Guidance Guidance Focused using using IBC funding which developed a a which developed Association, 19 ©2018 CliftonLarsonAllen LLP • Thereis Still Work to be Done • There is is There still no cure or treatment $ Estimated 2 billion to $3 to billion 2 billion needed to get a drug to market to a drug get to needed billion 20 ©2018 CliftonLarsonAllen LLP Questions? CliftonLarsonAllen ©2018 LLP

Greg Mitchell EVP, Finance and Administration ALS Association [email protected] 202-464-8650

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