Cystic Fibrosis Foundation
CYSTIC FIBROSIS FOUNDATION 21
CysticFibrosis is a form of mutation that occurs in the gene CysticFibrosis Transmembrane Regulator (CFTR), leading to abnormalsecretion of mucous and sweat. According to a study by Siracusa,Weiland, Acton, Chima, Chini, and Hoberman (2014), these secretionsmostly affect the associated organs such as the pancreas, liver,lungs, sinuses, and intestines. Also, the sticky and thick propertiesof the mucous can affect the reproductive organs when produced inexcess. Recent studies establish that about 30,000 people live withCF in the US alone, and 70,000 globally (Siracusa et al., 2014).According to Sayyid and Sellers (2017), one in every 29 people ofcaesarean ancestry is a carrier of the mutated CF gene. Although CFaffects one in every 43000 births (Sayyid & Sellers, 2017), itsimpacts are severe and costly to the Americans in lower incomeclasses (Trivedi, 2013). For this reason, the Cystic FibrosisFoundation (CFF) seeks to help the victims by supporting thedevelopment of drugs, funding research, and supporting care delivery.Consequently, the CFF is a global pioneer in search of the cure forCF through these activities. This study intends to analyze the CysticFibrosis Foundation with a special focus on its leadership structure,the financial strengths, and ethical commitments to understand waysin which it has influenced the lives of Americans.
Themission of is to provide both the cure andthe opportunities for the Cystic Fibrosis patients to lead full andproductive lives. It primarily focuses on the development of drugsfor Cystic Fibrosis, research, promoting access to quality care, andpromotion of individualized treatment to achieve this mission(“-About Us,” 2017).The foundation’s associations with donors, volunteers, scientistsand caregivers who take up various responsibilities in projects haveenabled achievement of the mission. According to the Chief ExecutiveOfficer Robert Beall, the mission and activities the foundationundertakes aresteeredtowards the dream of a day when no person will lose a life, parent,child, relative or friend to the FC (“Cystic FibrosisFoundation-About Us,” 2017). The Organization has made investmentsand organized donation forums to raise millions of dollars forfinancing the invention of drugs and effective therapies (Boyle,Bell, Konstan, McColley, Rowe, & Rietschel, 2014).Because of such efforts, the average life expectancy of children withCF has tripled in the past three decades.
TheHistory of CFF
CFFis a non-profit organization established in 1955 with a goal toprovide the information, finances, treatment and cure for CysticFibrosis (CF) in Philadelphia, Pennsylvania (“Our History,”2017). During this time, the organization has known as NationalCystic Fibrosis Research Foundationand formed by a group of parents and volunteers who were concernedwith the short life the young children with CF lived. Also, unliketoday, there was very little information about the CF since it wasrare. However, with a special focus on the children, this group ofparents laid down a strong foundation that yielded the availableresearch information, drugs, and treatment of cystic fibrosis.
CFFestablished its Care Centre Network in 1961 and dedicated it to thetreatment of the patients with CF (“Cystic FibrosisFoundation-About Us,” 2017). During those years, the patient’spredicted lifespan was ten years. However, with various milestones inresearch and clinical practices, this mean was raised ranging between30 and 40 years by the year 1990. In 9166 (“Cystic FibrosisResearch Milestones,” 2017), the organization designed and launchedits patient data registry, a system for collecting patient’sinformation from all its Care Centers for research and treatmentpurposes. This system saw the availability of significant informationthat has contributed to research over the years. The greatestmilestone documented in most studies was achieved in 1989 when thefoundation’s scientists discovered and presented the defective geneCFTR responsible for the pathogenesis of CF.
Themapping of this gene and its proteins opened opportunities forunderstanding CF. Consequently, the scientists were able to developthe Pulmozyme® drug that the Food and Drug Administration (FDA)approved in 1993 (Boyleet al., 2014 “Cystic Fibrosis Research Milestones,” 2017). Infunction, this drug weakened or rather thinned the mucous in thelungs thereby reducing the severity significantly for almost twodecades before its subsequent drug and the first for oraladministration capable of addressing the cause of CF entered intoclinical trials in 2006 (“s,” 2016).The effectiveness of this drug in increasing lung performance wasdocumented in 2008, indicating that drug could treat the causes ofCF. This drug was named Kalydeco in 2011 during its phase IIIdevelopment and completed in 2012 (Boyleet al., 2014).However, its approval for use in clinical settings was in 2014particularly for the patients with eight additional rare CFmutations.
Apartfrom the drug, CFF has conducted several fundraising including the$175 million via the Milestone campaign in 2010 and $3.3 million viaBreath of Life project in 2013 (“s”2016). Also, it has organized forums for private donors to contributeto the developmental research and treatment for the patients with CF.Foundation’s major achievements isevident in the current patients’ life span of the 30s, 40s, andeven beyond years. More importantly, its activities have influencedgreatly the current body of knowledge and technological advances inthe field of CF that modern institutions use to address the problem.
Currently,the Foundation is the leading global charity organization thatfocuses on the provision of health care and promotion of research.According to Trivedi a study by (2013), CFF is rated as a four-starorganization with high scores on financial and transparency inhumanitarian services.
Accordingto “-About Us” (2017), CFF has about 80chapters, and branches within the United States all dedicated forfunds raising and research programs. Also, it has established morethan 115 care centers and close to 53 affiliate programs thatfacilitate its activities across the US. According to Trivedi(2013), these care centers and affiliate programs, together with morethan 100 programs for adult treatment are the key drivers to theachievements the foundation has made. Such achievements includestaff training, community education, and health care delivery.
Thefoundation’s efforts are evident in the available CF drugs,therapies and information available for use in all health andresearch institutions worldwide (Nonprofits, 2015). Its care centersare popular as the effective national model for specialized andquality care for people with cystic fibrosis. These centers have alsofacilitated the sharing of information resources, widespread accessto approved CF treatments, and apparently, the impressive declines inboth CF deaths.
The established in 1955 has facilitated thedevelopment of CF drugs, therapies, and research activities leadingto healthy and informed communities in the US. The formal mission hasplayed a role of a great tool in providing the objectives andstrategies for fulfilling its purpose. In its operation, theFoundation has united different key players including the donors,scientists, and care providers who have contributed in its milestonessuch as Pulmozyme® and ivacaftor (Kalydeco). Also, the foundationhas achieved greatly in raising funds for driving research and drugdevelopment. The significance of this is that the productivity andsurvival of these patients are improved to be of normal healthypopulations.
Analysisof Leadership and Communication Strategies in CFF
Theestablishment of CFF in 1955 opened opportunities that have hadprofound effects onthe lives of those affected by CF. Specifically to low-incomeearners it hasrestored their hopes for life and empowered them to overcome dailychallenges. Consequently, it is the most trusted charity organizationby the donors, citizens and CF patients. However, achieving suchstatus has necessitated a highlevel of leadership and communication strategies within and outsidethe organizational settings. Clearly, the innovativeness leadershipand communication layouts are responsible for the dramaticdifferences it has made in the lives of people with CF disease.
BoardStructure and Management Strategies
Theleadership in the organization comprises of the board’schairperson, corporate officers,and senior staff. The current board chairperson is Catherine C.McLoud who is an overallleader during board meetings and facilitates major decision-making(“CysticFibrosis Foundation Leadership,”2017).The corporate officers are Preston W. Campbell, III, M.D. (Presidentand CEO), Marc S. Ginsky(Vice Presidentand ChiefOperating Officer) and Vera H. Twigg (Executive Vice President andChief FinancialOfficer) (“CysticFibrosis Foundation Leadership,”2017).These three lead in different segments of the foundation includingfinancial, and operation divisions, and oversee that variouspractices are in line with the foundation’s mission and objectives.
Theother level of leadership involves senior staffs who are in charge offoundations activities such as strategy development, internal andexternal communications, program managers and community partnerships(“CysticFibrosis Foundation Leadership,”2017).Together, these staff has responsibilities to see the success ofdifferent research and funding projects the foundation supports. More important, they oversee the recruitment of the people whodemonstrate innovativeness, creativity,and ability to connect with the community as staff or volunteers.
OrganizationStructure and Leadership Strategies
CFFmanagement depends on the Learning and Leadership Collaborative (LLC)model for leadership and management in the foundation. The LLC modelwas designed and implemented in in the period between 2002 and 2013,and allows the management, donors, volunteers and the staff pledgeand fulfill their pledged responsibilities to the CF patients(Godfrey& Oliver, 2014).Accordingto the study by Godfrey& Oliver (2014), thestrength of this model lies in its ten elements that are determinantsof Foundation’s success. Such include national and localleadership, patients and family involvement, registry data,transparency, evidence-based ideas, staff recruitment and training,performance tracking and reporting, and evaluation.Due to changing health and technological needs, this model requirescontinuous improvements. Unfortunately, it is not flexible enoughsince the integrationof new features requires lengthy processes of testing and validation.
Originally,CFF communications werebasedon the use of face-to-face platforms such as meetings, printingmedia,and emails. These strategies have evolved overtimewith increased adoption of the technology to include email listserv,conference calls, and internet learning (Godfrey& Oliver, 2014).Also,the foundation’s LLC models supportanelectronicrepository for data and financial resources. Such model ensures thatresearch information is accessible to the scientists and affiliateparties for the promotion of cystic fibrosis treatment.
PublicRelationsStrategies and Brand Techniques
Asa Non-profit organization, CFF requires public relation (PR) strategythat will help it to reach the people it needsmost. In this case, CFF PR strategy should focus on donors,volunteers and other potential stakeholders or partners (Stockhausen,2014).Currently, the foundation also uses social and digital media both forbrand development and to convey its messages to donors, public,and researcher by collaborating with media teams who highlight newsto the people promptlyfor varied needs for responses (Stockhausen,2014).Finally, the foundation has developed the strategies for conductingmedia outreach and interviews to ensure it reachesits widely distributed CFF community.
Evaluationof Communication Current Strategy
Accordingto Stockhausen (2014), effective communication strategy helpsa foundation achieve its core objectives and mission. Therefore, afoundation should concentrate on its PR plans, web strategies,and the marketing plans to ensure they are effective to the targetedgroups. The current strategy is effective as it has helped in thegrowth and milestones CFF has achieved. However, CFF requires lyingdown strategies that will facilitate its progress through thepromotionof mutual understanding, interaction with the stakeholders,transparency and public’s access to information. Thiswill open more opportunities to easily engage more donors andvolunteers while at the same time expanding its services to widerpopulations in the US.
Bothcommunication and leadership structures within an organization areimportant as they determine the pace at which the objectives areachieved.In most cases, effective communication acts as key the key tofinancial strength while leadership upholds organizationsperformance, reputation and brand development. For this reason, CFFrequires keepingits strategies updated and evaluated regularly to see continuouseffectiveness in increasing donors’ commitment. Also,the Foundationcan fulfill its responsibilities to the CF patients and communitiesby providing drugs and quality care.
Financialand Ethical Analysis
Accordingto CharityNavigator (2017) recentratings published on early April 2017, CFF is a four-star charityorganization with the performanceof 97 and 93 percent on financial management and accountabilityrespectively (See figure3in Appendices section).The achievement and maintenance of these statuses dependon a widerange of factors including the foundation`sability to gather findings and spend them appropriately. In fact, thefoundation’s form 990 that captures businesses financial a taxationperformance indicate that CFF spendsabout than 90 percent of funds providedby the donors (Charity Watch Report, 2016). Furthermore, severalstudies report that it does not divert its assets to other unrelatedactivities apart from research, health services collection of funds.Therefore, and based on these scores, the CFF is the most responsibleand committed charity entity to helping people suffering from thediseasein comparison to hundreds in the US.
BudgetaryResources, Structure, and Responsibilities
Theprimary source of finances for the foundation is its donors fromdifferent parts of the US including private companies andindividuals. According to a report by CysticFibrosis Foundations (2016),the foundation`sdependency on the donors is 110 percent. This report added thatunlike some other charity organizations, CFF doesnot receive government funding to facilitate its mission. Also, ithas established 70 chapters and centers distributed across the US actas the priority tools for collection of funds as well as supportingits search for the cure (Trivedi,2013 CysticFibrosis Foundations, 2016).The other source of its funds is its drug development model labeled“VenturePhilanthropy”(CysticFibrosis Foundations, 2016).Although drug development uses the achieved funds, the foundation hasrecorded robust return on investment (ROI) from its brand drugs andtherapies. In essence, this model aims at managing thecommercialization process to boost the scientific research on drugdevelopments.
CurrentFundraising Campaigns, Grant and Giving Opportunities
Accordingto CharityWatch Report (2016), thefoundation’s total revenues as per the fiscal year ending on Dec31, 2011,were $301 million (See figure 2 in Appendices section).Over the past five years, however, this revenue has increased due tocurrent fundraising campaigns. One ongoing campaign is#TakeaBreathforCF that involves several celebrities such as JaneLynch, Ringo Starr, Sylvester Stallone and Shania Twain in awarenesscreation and funds collection to facilitate the developmentof a cure(“CysticFibrosis Foundation-About Us,”2017).Others campaigns and events include Great Strides, CF Cycle for Life,CF Climb, and Xtreme Hike, all dedicated to bothdonations and finding acurefor the CF. In the previous years, few other programs were closed,including the Cincinnati’s campaigns that helped raiseapproximately $99,613 (Pollack,2014).According to the financial report released inJanuary 2016, this amount was 135 percent the targeted amount. Also,the foundation has a stronginfluence onthe US companies and individuals who are potential grants sources(Pollack,2014).These include the education institutions, and private corporationssuch as American Airlines, Messer, Macaron Bar, and CK Catering.Consequently, the Foundationhas expressed its interest in expanding its giving opportunities byreaching more scientists, academic projects and initiating newprograms.
CFFface challenges such as pressure and criticism from the publicdue to the organization’s dependency on the donations withouthaving for-profit affiliate entities are common. Also,although may require seekingfor government funding in future for the commitment by organizationsit has enlisted may not be guaranteed. Also,the expanding needs ofthe patients with CF may require the Foundationto expand its strategies, equipment, and assets in the course offinding the cure (Trivedi,2013).Nonetheless, the organization`simpact has been impressive,and its source of funds continues to expand with the adoption ofphilanthropic principles by modern organizations.
Budgetand Fundraising Transparency
Thefoundation’s form 990 is an effective indicator of the degrees ofboth and accountability and transparency practiced by the managementand stakeholders. As a charity entity, the transparency of thefoundation ismeasuredregardingaudited financials, provision of information, donor’s privacypolicies,and board members listed. The average score for both the transparencyand accountability since isdocumentedin different studies as 94.70 percent (CharityNavigator, 2017).Thisis a high rating and takes honesty, truth, and proper use of funds toachieve them. Evidently, recent auditing reports reveal that theorganization spends 97 percent of the donation in its listed programs(See figure1 in Appendices section). Moreover, about 2 percent ofthecollectedfundswhile the rest ofthe management and compensations.
CFFprovides its auditing and donation documents to its stakeholders andthe public through scheduled emails and other financial reports.Also,people can access its tax and program expenses from its website.Consequently, other concerned parties and donors can determineaccountability in the foundation as a measure for future commitmentsand contributions (Tremblay-Boire& Prakash, 2015).However, there have been questions aboutthe profit motives in the developmentof the drugs. Several studies have the need for profit from its drugsmay divert the foundation from its mission course due to conflict ofinterests. Also,some critiques pose that the profit from drug development should atone time be enough for the foundation without relying on donations. Finally, the foundation spends $300,000 annually for drugdevelopment, an amountthat has not reduced for the past at least five years (Pollack,2014).According to critics, this big investment can translate into highprofits through loyalties enough for the foundation to cut the cost.In this case, the company should cut down the price to promotepatients of CF as indicated in its mission.
Impactsof Ethical Operations
Despitethe criticism ofthe foundation activities, it is clear that it has achieved greatlyin all its missions. Particularly in the collectionof funds from donors, CFF has acquired and sometimes exceeded thetargeted amount easily. Thisis as result of maintaining a clean brand profile associated withhigh level of accountability and transparency (Tremblay-Boire& Prakash, 2015).More importantly, it is a bindingrelationship with other entities such as pharmacies and researchscientists aremaintained.
CFFhas dedicated much of its efforts in fighting the cystic fibrosisthrough funding research and search for a cure.It has, by far affected the lives of Americans in a positive way. Thesuccess is relatable to its leadership and communication practices,as it has demonstrated the significantavailability of information to its donors, the public, and otherstakeholders. More importantly, it has demonstrated efficient use ofits resources in the course of pursuing its mission. Consequently,there are many potential organizations willing to support its coursein fighting CF. Thishasbeendemonstratedin the previous fundraisingevents and campaigns involving the academic and researchinstitutions, public, corporations, and celebrities. Althoughdifferent sources have ranked CFF as the leader in the charity andnon-profit industry, the foundation should address various concernsraised concerning its profitability and self-sustenance as reflectedin its previous milestones.
CFFhave struggled through a collectionof funds and maintenance of ethical profile to be a world leader itis today. In the course of time, it has acquired strong grounds thatcan be used to argue its sustainability. One such strength is itswide financial resources available as influenced by its clean imageand popularity. Its commitment to a good course of helping the sickin the community strengthened by its accountability (97 percentefficiency in resource use) is compelling enough to potentialcontributors. Also, the organization has professionalism in theadoptionof effective models in its practices. Evidently, both Learning andLeadership (LLC) and Venture Philanthropy have enabled the foundationtomaintain the best management practices and increased profitrespectively. Last but not the least, the organization`sdrug development projects can guarantee significant financial basefor the cooperation to compliment donors efforts.
Alongthe strengths come the weaknesses that have a significantinfluence onthe growth and development of the foundation. For example, thecomplete dependency on the donation restricts the foundation’smilestones as per donors’ pace and commitment. Also,the foundation’s inability to address the concerns rose onprofitability and pricing of its approved drugs can discouragepotential donors and volunteers. Also, the donors’ commitment canbeunderminedby external forces such as economic crisis. Lastly, the compensationto the staff can be a cause of accountability issues as well asmaintenance of donors’ trust.
Nonetheless,the sustainability of the foundation is guaranteed as there are manyopportunities for financial sources, expanding research andpartnering with willing individuals and corporations. Moreover, itsstrengths mentioned above can play as drivers for a significantperiod. However, the organization can achieve in accelerated pace bymitigating the weaknesses particularly those concerning management,PR, and accountability.
CFFhave greatly impacted the lives of CF patients positively for half adecade it has been in operation. Consequently, it has attracted manypotential players as donors and volunteers who have facilitated itsmilestone and growth over the years. Based on the analysis, thefoundation has sustainable strategies and support from the people andcorporations. Its present profile increases its eligibility for fundsfrom many organizations especially in the modern times when manycorporations believe in giving back to the society. CFF, however,should maintain its cleanimage and brand by ensuring a highlevel of professionalism, integrity, accountability and transparency.Also, it should revise its application models to eliminate theweakness and introduce new elements for profit generation. Since itisbelievedthat profit motives may divert the energy from its mission, it shouldfurther revise its policies to promote its ethical practices.
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Figure1.Showing expenses in financial year endingDecember 13st, 2015
Adaptedfrom CharityNavigator (2017), Ratingfor ,1
Figure2.Showing IncomeStatement of the Financial Year ending December 31, 2015
Adaptedfrom CharityNavigator (2017), Ratingfor ,1
Figure3.Showing the Overall Average Scores on Financial, Accountabilityand Transparency ratings
Adaptedfrom CharityNavigator (2017), Ratingfor ,1
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