About ALS · 2009-09-03 · ALS TDI Annual Report 2008 Dedication: Sean Forrester Scott This annual...
Transcript of About ALS · 2009-09-03 · ALS TDI Annual Report 2008 Dedication: Sean Forrester Scott This annual...
2008ALS TDI Annual Report
Dedication: Sean Forrester Scott This annual report is dedicated to the memory of Sean
Forrester Scott (1969-2009). On February 9, 2009, Sean,
president of the ALS Therapy Development Institute died due
to complications from amyotrophic lateral sclerosis (ALS, Lou
Gehrig’s disease). He was 39. Sean shared his final thoughts
in an e-mail message to close friends and relatives composed
shortly before his death:
“Just last year I was worried about turning 40. Now it appears I’ll never have the chance…It’s both surreal and horrifying to watch as muscles fail and with them skills that you spend a lifetime developing simply disappear. I’d trade every minute that I’ve got left for just one more chance to run across the tennis court and crack a forehand…I spent the last decade building an infrastructure to combat this disease. I had declared war on it but in the end it got me first. At a minimum, I think I earned the right to be referred to as KIA [killed in action] and not as a victim. I’d prefer that you remember me that way.”
About ALS:Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons. While about 5 percent of cases have been linked to a genetic mutation, generally there is no broadly accepted cause of ALS and only one, marginally effective therapeutic prescribed to combat it. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS patients survive for 10 or more years. As many as 30,000 Americans have ALS at any given time, while the worldwide population is estimated at 400,000.
2008ALS TDI Annual Report
At the ALS Therapy Development Institute, we are driven by a single, profoundly important goal – to discover viable treatments for ALS as quickly as possible.
2008ALS TDI Annual Report
mission: effective treatments to slow and stop ALS
2008ALS TDI Annual Report
ALS TDI: A Collaboration of Hope and Science for Today’s Patients
Mission: The mission of ALS Therapy Development Institute (ALS TDI) is to develop effective therapeutics that stop ALS as soon as possible.
An Interdisciplinary TeamA staff of over 30 scientists and technicians work on behalf of ALS patients to discover and advance the best new ideas to stop ALS.
o RNA & Protein Validation o Cell & Molecular Biology
o Computational Biology o Analytical Chemistry
o In Vitro Validation o In Vivo Validation
o Gene Expression o Bioinformatics
o Pharmacology o Histology
Focused on Finding SolutionsAmyotrophic Lateral Sclerosis = ALS (Lou Gehrig’s disease)
o 30, 000+ ALS patients in the U.S.
o 350,000+ patients worldwide
o A new case every 90 mintues
o Incidence rate is about the same as Multiple Sclerosis
o No known cause, no known cure
2008ALS TDI Annual Report
2008ALS TDI Annual Report
A world-class research center, built by and for patients today, ALS TDI is the world’s only non-profit biotechnology company with a single focus; stop ALS. With more than 30 professional scientists, the Institute is combating the disease like no one else.
With more than 30 professional scientists, the Institute is combating the disease like no one else.
2008ALS TDI Annual Report
Working with leaders in academia and industry is a central
component of the comprehensive assault on ALS being undertaken
at ALS TDI. Since the publication of the last annual report, the
Institute cooperated with numerous organizations in order to
advance the best therapeutics possible to slow and stop disease
progression.
Specifically, the Institute developed strong collaborations with three
industrial leaders – Microbix, Asklepios and Paragon to develop
gene therapy constructs, based on changes in gene expression
related to disease onset and progression that were identified
through the Institute’s massive discovery biology effort. By working
with some of the top viral vector manufacturers, ALS TDI is able to
rapidly produce and move toward the validation of a gene therapy
approach to slowing and stopping specific disease pathology.
Crucial clinical partnerships were entered into with a variety of top-
tier ALS clinics, such as the Methodist Neurological Institute and
the ALS and Neuromuscular Center at the UC Irvine Medical Center.
These relationships opened the door for the collection of blood
and other samples from ALS patients which could be analyzed for
changes in gene expression levels and compared to data found in
the animal model of disease. This work has led to the identification
of many new target pathways and genes which the Institute is now
developing therapeutics against.
Pictured left: These are just some of the partners that the ALS Therapy Development Institute works with to advance therapeutics through its rigorous drug development pipeline. These partners provide invaluable services to ALS TDI and play a key role in the development of therapeutics, genomic and proteomic information and research assistance. ALS TDI is proud to have these world-class organizations as its partners.
Collaboration is Key to Success
2008ALS TDI Annual Report
The Institute operates a robust discovery program and has the capacity to develop and rigorously validate therapeutics, including small molecules, gene therapies and cell based constructs. This approach to therapeutic development is unmatched in the ALS field.
2008ALS TDI Annual Report
operates a robust discovery program
2008ALS TDI Annual Report
Most scientists agree that a person’s propensity for developing a disease is a factor of both environment and genetics. While the figures vary slightly from publication to publication, it is commonly accepted that approximately 5-10% of ALS cases are inherited from generation to generation and can be linked to seemingly specific genetics. Of all these ALS cases, known as familial ALS, approximately 20% are caused by a genetic mutation which leads to the over expression of a mutant SOD1 enzyme.
Soon after this discovery in 1995 by a consortium of researchers, a sufficient model of disease was created through the breeding of genetically altered mice. This provided, for the first time, a viable preclinical model in which to screen, test and develop potential therapeutics. While the model was considered to be one of the most robust of its kind in the field of neurodegenerative research, problems still existed. The model’s use varied from lab to lab and little was known about how best to use it so that results from animal testing would mimic that which was seen in eventual clinical trials.
ALS TDI has the mission to develop effective therapeutics that slow and stop disease, and as such, when a drug was claimed by another laboratory to do just that the Institute had an obligation to the patient community that funds it to validate those findings. Unfortunately the opposite consistently happened both in the testing of drugs in the clinic and retesting of them at the Institute. This led to the identification of several statistically important variables (such as the number of animals used in the control and treatment groups) which
Of Mice and Men : Using theTools We Have As Best We Can
Caption: In 2008, ALS TDI scientists traveled to points domestic and abroad to share the importance of these findings with other research organizations, including a presentation at the 16th Annual MND/ALS International Research Symposium in Birmingham, England. The optimal efficacy study design is starting to be used by many organizations, and has been named by PRIZE4LIFE as a requirement of researchers entering its $1 million ALS biomarker contest.
when controlled for were shown to increase the likelihood that preclinical results would better match up with clinical results.
They are as follows:
Number of Animals - at least 12 per group
Litter Match - each treated male (and female) in the treatment group has a brother (and sister, respectively) in the control group
Gender Match - same number of males and females in each group
Copy Drift - - all should have the same # of mutations confirmed before and after usage in study.
2008ALS TDI Annual Report
In 2008, dozens of validation studies were conducted based on information garnered through internal discovery efforts as well as the continuous mining of data published by other laboratories.
2008ALS TDI Annual Report
dozens of validation studies
2008ALS TDI Annual Report
A collision of experience and innovation takes place every Tuesday in the conference room at the
Institute during the weekly “Portfolio and Project Update.” At any given time, there are dozens of
different discovery biology and therapeutic validation studies taking place at the Institute. Rather
than focusing on one aspect of disease, the Institute has built the ability to focus on everything at once.
Everyday in the lab, researchers comb information on the expression of gene and proteins and mine data
published by other research institutes. This information is analyzed and new projects proposed,
debated and prioritized.
ALS TDI, We Let the Data Speak for Itself
The Neurodegeneration Knowledgesphere contains information on how the disease changes the expression of genes, proteins, progresses throughout the body, etc, and is able to cross-reference published literature in order to help ALS TDI researchers build and prioritize potential therapeutics.
“Everyone on our team is a specialist in at least one area. We are organized
so that there is a consistent flow of information between the core research
groups. We are moving so fast at ALS TDI, it’s nearly impossible to stay current
on everyone’s experiments. This meeting allows us to regroup each week,
which is crucial in order to maintain our momentum.” – JERRy DE ZUTTER, Ph.D., Team Leader, In Vitro Validation
“I’m not the first one to say that scientists can be rather
disorganized. Project management isn’t just about
kicking people in the butt, it’s about preventing
bottlenecks and prioritizing,” – BETH LEVINE, Project Management
“No one person owns a project at ALS TDI.
Everyone on the research team has a chance
to ask questions, suggest experiments and
participate in the decision making process. This
approach prevents our team from working in
silos and encourages cross-communication,
which often leads to the identification of key
obstacles that need to be overcome at the
beginning of a new project rather than
half-way through.” – STEVEN PERRIN, Ph.D., CEO/CSO
2008ALS TDI Annual Report
2008ALS TDI Annual Report
To execute their comprehensive scientific effort, the Cambridge, Massachusetts-based research institute collaborates with leaders in both academia and industry. In June 2009, ALS TDI launched a virtual tour of its research center which is now available online at www.als.net
Check out the 12-minute ALS TDI virtual lab tour online at www.als.net
2008ALS TDI Annual Report
ALS TDI 00846 – a biologic – Identified as Lead Therapeutic Candidate
Reached or Surpassed All Scientific Milestones set by MDA in second year of $18 Million Grant
Presented Optimal Efficacy Study Design to International ALS Organizations and Continued to Educate Other Laboratories and Researchers on its Use
Expanded Gene Therapy Capabilities via Collaboration with Asklepios
o
o
o
o
o
Recent Scientific Accomplishments
Over the past year, ALS TDI has made tremendous advances towards accomplishing its mission: developing effective therapeutics which slow and stop amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease). The Research Staff at ALS TDI report progress to each other during regular New Lead and Project & Portfolio meetings, to the ALS Community via quarterly Research Update Webcasts, and to the Boards of Directors for ALS TDI, MDA and other funding organizations. Here are the top accomplishments which Research Staff reported on in 2008:
The Research Pipeline at ALS TDI includes dozens of projects, each with the potential for developing into a lead therapeutic candidate and moving toward clinical trial. The Research Staff meets weekly to discuss progress on these projects, prioritize resources and debate the merits of adding or advancing additional potential therapeutics into the queue. For a complete glimpse of the Research Pipeline at ALS TDI, visit our website and select “Research Pipeline.”
2008ALS TDI Annual Report
Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons.
While about 5 percent of cases have been linked to a genetic mutation, generally there is no broadly accepted cause of ALS and only one, marginally effective therapeutic prescribed to combat it.
Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS patients survive for 10 or more years.
As many as 30,000 Americans have ALS at any given time, with a worldwide population estimated at least 350,000.
2008ALS TDI Annual Report
About ALS:
every 90 minutes a new case of ALS is confirmed
2008ALS TDI Annual Report
ALS Research 101 Seminar
Create Accessible, Open, Unbiased Lines of Communication for the Entire ALS Community
BY THE NUMBERS (Attendance)
205 – 101 Seminar
242 – Monthly Webinar
600 – Research Webcast
550 – Leadership Summit
205 people attended 10 different seminars in cities across the United States throughout the year. These seminars were created by John McCarty, Ph.D. and were co-led by the Institute’s regional staff. The interactive 2-hour discussion focused on describing in detail the drug development process, bridging the translational research gap and answering questions about the clinical trial process.
The ALS Therapy Development Institute was founded in 1999 with the idea that ALS patients should be put in the driver’s seat when it came to research. The Institute judges its success by the continuing development and evolution of new programs to empower and involve the ALS community in research through a broad network of Informational Programs, such as its successful ALS Research 101 Seminar. Whether it be the traditional in-person meeting with a group of pALS and cALS or an online discussion via webinar or webcast, these Informational Programs are specifically designed to foster two-way communication between ALS patient and ALS researcher. Here are the numbers for participation for the most recent year:
Introduction to ALS Research Monthly Webinars ALS TDI broke ground in the ALS research world by committing to and holding a monthly webinar with ALS patients and their family members. During this 30-minute, 20-slide presentation, online viewers were introduced to the basic premises of ALS research, asked questions on the latest advancements and interacted directly with a variety of research staff at ALS TDI.
ALS Community Research Update WebcastSean Scott, President of ALS TDI, hosted the first of three conference calls in February of 2008. The second and third were help in July and December respectively. On average, 200 people joined Sean, Steve Perrin, Ph.D., and John McCarty, Ph.D. for a discussion on progress at ALS TDI and elsewhere toward effective therapeutics to slow or stop ALS. The December update was broadcast via the same webcast system as the Summit, streaming live audio and video to the web.
4th Annual Leadership SummitLast year, ALS patient Jeff Cronon challenged ALS TDI to find a way to make its Leadership Summit more accessible to patients that could not afford to travel to Cambridge themselves. And found a way we did; by webcasting 4-hours of the event’s scientific presentations and panel discussion (Stan Appel, M.D., Sharon Hesterlee, Ph.D., Jean-Pierre Julien, Ph.D., Michael Strong, M.D., and Steve Perrin, Ph.D.). In addition to the 150 people that participated in person for a Lab Tour and the Research Symposium, more than 400 people from around the world turned in for some portion of the webcast. They were treated to significant updates from ALS TDI, including the introduction of its lead candidate molecules.
alsresearch
101
2008ALS TDI Annual Report
The ALS Therapy Development Institute is the world’s first non-profit biotechnology company. As such, we combine the best practices of industrial scale, world-class research organization with the focus and power of a nonprofit mission. An important part of our strategy for success is to leverage the knowledge and passion of the ALS Community in order to advance our shared vision for a future where ALS can be stopped. Therefore, the Institute has created the most comprehensive open-communication programs in the whole of the ALS field – all of which are offered free of charge and to the entire ALS Community.
2008ALS TDI Annual Report
Open Communications to Facilitate a Future Where ALS Can be stopped
2008ALS TDI Annual Report
Hope and inspiration are everywhere on ALSCommunity.org. There are currently 150 different families that have set up their own page and presence and ALS TDI has a goal of doubling that number by the end of 2009. Each and every member of the ALS community – patients, caregivers, friends, employers – has a role to play in making a world where ALS can be stopped a reality. By providing a place for all these people and corporations to come together, ALSCommunity.org is designed to harness the power of online social networking and create a vibrant web-based machine which will inspire and empower all.
The ALS Therapy Development Institute receives a great deal of its funding via an expansive grassroots fundraising network. This group of dedicated and passionate supporters provides more than just funding to ALS TDI - they provide purpose, direction and guidance to each other and all those joined together in the effort to end ALS. ALS TDI has set up a grassroots organizing program that informs, educates, empowers and activates. To support the further building of connections between our supporters, the Institute launched a new, dynamic, online social networking platform called ALSCommunity.org.
A Grassroots organizing program that informs, educates, empowers and activates.
CON
NEC
T ALSCommunity.org Launched to Connect, Serve and Inspire
SER
VE
Designed to serve the entire ALS community, this new interface allows for uses to post pictures, stories, products, events, links and information. Based on popular online social networking sites such as Facebook, ALSCommunity.org users manage their own content themselves, link to each others pages and events. All ALS community members are invited to partake in this program as there is no requirement that a user raise funds for ALS TDI.
INSP
IRE
TeamTDI
2008ALS TDI Annual Report
ALS TDI reports its progress and accomplishments directly to the ALS community in a variety of venues:
o ALS Research 101 (a traveling seminar)
o Responding to the ALS Crisis (a monthly webinar)
o The ALS Forum (an online discussion board)
o Leadership Summit & Open House (annual research symposium)
2008ALS TDI Annual Report
ALS Forum has 3,200 members
2008ALS TDI Annual Report
AL STDI AL STDI
Leadership Grants Push Research Forward
In 2008, the ALS Therapy Development Institute was the recipient of grants from two major funders; The RGK Foundation and the Muscular Dystrophy Associations’ Augie’s Quest. These forward thinking organizations provided key commitments and crucial unrestricted funding which enabled ALS research to advance quicker than ever before. The involvement of these organizations doesn’t end with the writing of a check however; they stay involved in key decision making at the Institute and receive regular, detailed updates from the Institute’s top research team members.
About MDA’s Augie’s Quest
Curing ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) requires dismantling the disease gene by gene and protein by protein. Armed with this information, research will finally have the ammunition needed to develop highly targeted therapeutics to slow, stop and arrest the disease. Augie’s Quest is an aggressive, cure-driven effort singularly focused on finding treatments and cures for ALS. As an initiative of the Muscular Dystrophy Association and the MDA’s ALS Division, Augie’s Quest is recognized as a world leader in providing funding and raising awareness of the fatal neurodegenerative disease which strikes a new person every 90 minutes in the United States alone. ALS TDI and MDA/AQ have been partners in scientific, outreach and fundraising efforts since 2007 – encompassing a $36 million joint research effort – the largest of its kind in the world.
About the RGK FoundationThe RGK Foundation is an independent foundation established in 1966 by Ronya and George Kozmetsky. The RGK Foundation endeavors to be a catalyst for progressive change in humanitarian concerns. Guiding the Foundation is a deep reverence for democracy and a civil society together with the founders’ values of foresight, imagination and discovery. By seeking innovative projects in the area of health, education, human services and community affairs, the Foundation strives to advance knowledge, improve society and help realize human potential. The RGK Foundation has been a long-time partner and supporter of ALS TDI, enabling its growth over the past decade to become the world’s leading ALS research effort. In 2008, the RGK Foundation renewed its confidence in ALS TDI with a gift of $1 million.
www.augiesquest.com
www.rgkfoundation.com
ALS TDI received $11 million in funding in 2008 and spent more than $9 million on research.
2008ALS TDI Annual Report
2008ALS TDI Annual Report
ALS TDI is a 501c3 registered non-profit organization. Our tax identification number is 04-3462719. As a non-profit organization built by and for ALS patients, ALS TDI takes great pride in being as transparent as possible. The Institute provides more detailed information about its research, fundraising and expenses than most similar organizations. In fact, all of ALS TDI’s financial and annual reports are available via its website at www.als.net/aboutus
2008ALS TDI Annual Report
Donations to ALS TDI are tax-deductible.
2008ALS TDI Annual Report
Passionate Leadership Renews ALS TDI
A new Chief Executive Officer, President and Board Member were named during this past Annual Meeting of the Board of Directors of the ALS Therapy Development Institute. The Board was provided updates on the Institute’s fundraising efforts, research and development advances and overall performance toward accomplishing its mission – the creation of effective treatments to slow and stop ALS (amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease). The board works closely with the executive team at ALS TDI to ensure that the maximum amount of funding is spent on research. For more information on the Institute’s finances in 2008, please see the next two pages of this Annual Report. The following appointments were made:
Ted Reich, CPA – Appointed Board Member An experienced lawyer and C.P.A., Mr. Reich is a partner at Reich and Walner LLP of Oakland, California. Ted’s son Corey 22 (picture to right) was diagnosed with ALS in October 2007. The Reich family has raised more than $700,000 for research since then, and has been very active in their local ALS community. With his appointment, Mr. Reich became the 12th voting board member of the world’s largest non-profit biotech. A full list of the board is provided on the back cover of this Annual Report.
Steven Perrin, Ph.D. – Appointed Chief Executive OfficerAs chief executive officer and chief scientific officer at ALS TDI, Steve Perrin, Ph.D., is responsible for ensuring the Institute continues to advance its mission to discover and develop effective therapeutics for ALS. Dr. Perrin is an expert in the drug development process and has nearly two decades of experience in leading preclinical and translational research efforts. Since coming to ALS TDI in 2007, Dr. Perrin has added new capabilities to the Institute’s drug development pipeline, which now includes small molecules, gene therapy, protein biologics and stem cell projects.
Maureen A. Lister – Appointed President Maureen Lister, a corporate operations and finance expert with experience in the biomedical and high tech industries, joined ALS TDI in the spring of 2007 as its chief financial officer and was named chief operating officer in 2008. Under Mrs. Lister’s leadership, ALS TDI has increased its fundraising revenue to new highs in each of the last two years. The Institute has also substantially increased the percentage it spends on research, the largest in the field, by focusing on creating more efficient administrative and fundraising operations under Mrs. Lister’s guidance.
The board works closely with the executive team at ALS TDI to ensure that the maximum amount of funding is spent on research.
2008ALS TDI Annual Report
2008ALS TDI Annual Report
A world-class scientific research center, built by and for ALS patients, ALS TDI is a nonprofit biotechnology company that combines the proven methods and best practices used in industry with the passion of a nonprofit mission. Our research team is executing the largest discovery biology and drug development project possible today to combat ALS.
Built by and for ALS patients
Assets FY2008
Cash 2,775,559
Accounts&PledgesReceivable 83,911
PrepaidExpenses 117,094
Investments 5,302
FixedAssets(Net) 885,612
OtherAssets(Net) 205,632
totAlAssets 4,073,110
liAbilities&NetAssets
TotalLiabilities 1,124,695
TotalNetAssets 2,948,415
totAlUNrestrictedliAbilitiesANdNetAssets 4,073,110
PUblicsUPPortANdreveNUes
Grants&Contracts 8,520,361
SpecialEvents&Contributions(Net)2,034,534
GeneralContributions 192,738
DonatedGood&Services 218,973
InterestandOther 55,426
NetPUblicsUPPortANdreveNUes 11,022,032
exPeNses FY2008
ProgrAmservices
Research&Development
SciencePrograms5,242,507
Lab 1,888,703
Informatics 317,711
PatientServices 473,104
Clinical 41,170
Communications 793,519
BusinessDevelopment 262,092
totAlProgrAmservices 9,018,806
sUPPortservices
General&Administrative 779,624
Fundraising 576,250
totAlsUPPortservices 1,355,874
totAlexPeNses 10,374,680
2008:mAJorgiFtsANdgrAssrootsFUNdrAisiNgdriviNgForcesbeHiNdbestYeArYet
For the fiscal year ending December 31, 2008, ALS TDI recognized more than $11 million in public support and un-restricted revenue. 2008 represented the InstItute’s sIngle largest fundraIsIng year to date. This support came from a variety of sources, including more than $8.5 million from grants and contracts, $2.2 million in net contributions from individuals and grassroots fundraising efforts. A full break-down of unrestricted revenue, assets and expenses is be-low. New revenues led to the expansion of resources available at ALS TDI and most importantly nearly $2 mIllIon addI-tIonal spent on Its scIence program. In addition, the ALS TDI continued its trend of reducing the percentage of revenues spend on fundraising and administrative efforts leading to the hIghest ratIo of spendIng on executIng Its prImary program In hIstory - nearly 87%
(allfiguredbelowareinwholeu.s.dollars)
ALS Therapy Development Institute is a Federally Registered Non-Profit Organization.Our Tax-Exempt (EIN) is 043462719. Additional state-specific tax-exemption information available upon request.
The ALS Therapy Development Institute (ALS TDI) is a registered501(c)3 non-profit charitable organization. For complete financialinformation,pleasecontactMaureenLister,President,617-441-7200.
2008:NeArlY$2millioNmorerAisedANdsPeNtoNreseArcHtHANtHeYeArbeFore
Each year, ALS TDI judges its success by a single measure - are we closer to an effective therapeutic that before? In 2008, the Institute received more support in a single year than any year previously - translatIng Into tremendous growth In spendIng In Its scIence programs overall. In addition, the Institute was able to generate more fundraising leads than every before by creating new and empowering communication programs designed to reach the entire ALS commu-nity. In addition, the Institute continued to lower the ratio per dollar spent on fundraising - the lowest percentage in the history of the organization. a growIng network of passIonate and actIve supporters kept costs down.
These are just numbers on a piece of paper, important numbers they are. However - are we closer to achieving our mission? In 2008, at the 4th Annual Leadership Summit held along the banks of the Charles River in Boston, Dr. Steven Perrin, Chief Scientific Officer of ALS TDI announced that the Institute has discovered a molecule of great interest. the molecule, known only as als tdI 00846, had been IdentIfIed by als tdI researchers to slow progressIon of dIsease, slow loss of body weIght and overall Increase survIval In preclInIcal testIng.
exPeNses
ProgrAmservices
Research & Development SciencePrograms Lab Informatics PatientServices Clinical
Communications Business Development totAlProgrAmservices
sUPPortservices
General & Administrative
Fundraising totAlsUPPortservices
totAlexPeNses
AmoUNt
5,242,5071,888,703
317,711473,104
41,170793,519262,092
9,018,806
779,624576,250
1,355,874
10,374,680
rAtio
50.53%18.20%3.06%4.56%0.40%7.65%2.53%86.93%
7.52%5.55%13.07%
100.00%
AmoUNt
3,137,9832,024,445
405,878378,051
24,575504,352256,333
6,753,617
581,598495,552
1,077,150
7,830,767
rAtio
40.07%26.13%5.18%4.83%0.31%6.44%3.27%86.23%
7.44%6.33%13.77%
100.00%
AmoUNt
1,692,0481,443,998
353,370204,882
29,859423,584167,230
4,314,971
337,848419,348757,196
5,072,167
rAtio
33.36%28.47%6.97%4.04%0.59%8.35%3.30%85.08%
6.65%8.27%14.92%
100.00%
AmoUNt
1,162,4661,214,299
150,697194,266
48,814237,336131,821
3,139,699
221,201374,119595,320
3,735,019
rAtio
31.12%32.51%4.03%5.20%1.31%6.35%3.53%84.05%
5.93%10.02%15.95%
100.00%
2008 2007 2006 2005
OtHELEadErsHip GivinG
accELEratE rEsEarcHLending drug discovery for today’s ALS patients
Research Champion ($25,000 or more)
ALS Family Charitable Foundation IncAnonymousCohen and Malad, LLPDick and Dawn Sanderson FundHelp America FoundationHMS Host InvitationalInsource Services, Inc.Javier and Rose BurilloKeyBank National AssociationMuscular Dystrophy Association
ALS Family Charitable FundSean Forrester Scott FundSteve Milne Effort
HMS Host Fund
Corey Reich FundFriends for Faye Fund
Research Visionary ($10,000 - $24,999)
A and B Markstein FoundationA Midwinter Night DreamAhrens and DeAngeli PLLCAnn Arbor Active Against ALSASD FoundationBarbee RubensteinBay Alarm Fund c/o East Bay Community FoundationBuffalo Renaissance FoundationChris Stoikos MemorialDellabarca Design and Build, IncDoug and Ellen ReichFran Delaney FoundationGerald and Virginia DavidsonHealthport TechnologiesIan and Sandra MulhinchJeremy BlackburnJohn HechtKeith and Jill MelansonKendra KeatingLarry and Susan RicksenMark EmmersonMatt White Cure ALS Foundation IncMoglia Family FoundationMr and Mrs Wynne Gulden JrNew Jersey PGANokia Inc.
Corey Reich FundNorthport High School FundCorey Reich FundAnn Arbor Acitve Against ALS Fund
Corey Reich FundCorey Reich Fund
Margaret Roblin FundChris Stoikos FundCorey Reich FundCorey Reich FundFran Delaney FundJeff Cronon FundJeff Cronon FundMary Lou Krauseneck FundPayne Family FundBob Rosencrans FundKen Melanson FundCorey Reich FundCorey Reich FundCorey Reich FundMatt White FundMargaret Roblin FundMarie Garratt Memorial Fund
Phil Kramer Fund
Name Fund
Name Fund
Olson ALS Foundation INCRadiology, Inc.Reich and Walner LLPRichard TuckerRichard W Rupp Foundation IncRide For LifeRiverview Medical CenterRoby and Nadja MolnarRuss and Sara FoszczSteven BergerStillwell Hansen IncStoryzon, LLCTaylor Fresh Foods IncThe MBK FoundationThe Thorson FoundationThe Torretta FoundationTim BlaskovichTom and Paula KeatingToni and Don LobackWarner Bros. Entertainment IncWesthaven Charities IncWestphal Family FoundationWilliam and Suzy Vogler
Olson ALS FundFriends for Faye FundCorey Reich FundJeff Cronon FundMargaret Roblin Fund
Pam Callahan FundRoby Molnar Swiss FundJenny Stoddard FundCorey Reich FundPam Callahan FundCorey Reich FundCorey Reich FundCorey Reich Fund
Lee Blaskovich FundCorey Reich FundFriends for Faye FundSteve Greenspan Fund
Corey Reich FundJenny Stoddard Fund
Name Fund
Parkersburg Area Community FoundationRandy CraftRGK FoundationSierra Pacific FoundationThe James and Alice McGonagle Charitable FundThe Jeff Julian ALS FoundationTheodore and Wendy Reich
Parkersburg Area Community FoundationCorey Reich Fund
Corey Reich FundMcGonagle Fund
Corey Reich Fund
Name Fund
Research Champion continued
Research Visionary continued
Each member of the ALS TDI team brings with them passion, experience and commitment to success. Your membership in Leadership Giving Circle helps to ensure that our scientists have the critical resources they need. This is your lab; you are an important part of the team. Each member is recognized on the ALS TDI website, in the Annual Report and the Leadership Summit Guidebook.
2008 Calendar Year
OResearch Steward ($5,000 - $9,999)
ALS Benefit AccountBergan Mercy Medical StaffBoulder Peak LLCBurkhart Advertising IncConnecticut Friends For ALS ResearchCore Network, LLCCredit Suisse Americas Foundation mini programDaniel and Theresa WalnerDarwin and Dorothy WiekampDavid and Jessica AntalDavid and Mitzi SabatoDavid BrasonDennis and Patricia-Ann BourassaDoty Family FoundationDoug CotterEnterpriseFrank MurphyFrey Electric ConstructionFriends of Jim HughesGary BrostHealth Plan of NevadaHilary JordanIndiana State Seniors Golf AssocITW FoundationJames HerbertJeff RedmanJennifer HuntingtonJim MarshallJohn and Beverly ClineJohn and Mary RicksenKaren RegensdorferLedge Light Federal Credit UnionLeslie WilperLower Falls Wine CompanyMarilyn AdamsMemorial Health SystemNelson Cambata
Anthony Tucker FundMark Christensen Fund5430 Sports FundFriends for Faye FundElliot Macht FundGloria Tourk EffortManhattan FundCorey Reich FundFriends for Faye FundBig G FundFriends for Faye FundMargaret Roblin FundBourassa FundCorey Reich FundJeff Cronon FundSteve Milne EffortJeff Cronon FundMargaret Roblin FundJim Hughes FundMargaret Roblin Fund
Jeff Cronon Fund
Eddie Esparza FundCorey Reich FundOrange County FundStephen Heywood FundStephen Heywood FundJeff Cronon FundCorey Reich FundMargaret Roblin FundBourassa Fund
Minervino Family Fund
Friends for Faye FundMarie Garratt Memorial Fund
Name Fund
New Era Cap Co IncNutter, McClennen and Fish LLPPamal Broadcasting LTDPatricia LeePeter ColichidasPolo Ralph Lauren FoundationPotter General IncRichard and Vivian DouglassRichard PortewigRobert and Alice Butler Family Charitable FoundationRobert and Lila TickmanRoger and Beverly FreemanRubin KuznitskySaint Joseph RMC IncSand CreekSid TheusSusan A Kireker Memorial TrustTaylor Family Investments LLC.The Stanfield FoundationThe Stella Matutina O’Connor FoundationThomas S. Watson Family FoundationWiliam HuntressWilliam and Betsy LeitchWilliam HungerfordWoodbine Bend Inc.Woodward
Corey Reich FundPeter Colichidas Fund
Jeff Cronon FundDick Douglass EffortCorey Reich FundJennifer Nichols Fund
Herb Schwartz FundCorey Reich FundRubin Kuznitsky FundFriends for Faye FundRubin Kuznitsky FundJeff Cronon Fund
Corey Reich FundStanfield Family ALS Research FundMary Lou Krauseneck Fund
Margaret Roblin FundStephen Heywood FundMargaret Roblin FundJenny Stoddard FundScott McWhorter Fund
Name Fund
Research Advocate ($2,500 - $4,999)
Robert StevensonRon SaccoRoura and Melamed Attorney’s at LawSharing Hope FoundationSteamboat Springs TriathlonStephen and Bernadette CooperStephen Peckiconis and Dona NicholasSteven and Linda BauersachsSteven RootStuart and Anne KnowlesSusan JusticeT.J. Wesley IIIThe Bay State Federal SavingsThe Delta Interests LLCThe Demakos FoundationTimothy GeigerTodd BrasonTracy LeonardTTM Holdings LLCTurner Oil and Gas PropertiesUniversity of Pittsburgh Medical CenterVanguard Charitable Endowment ProgramWells Fargo Investments, LLCWilliam and Cathy Raftery
Margaret Roblin Fund
5430 Sports Fund
Linda Bauersachs FundMargaret Roblin FundCorey Reich Fund
Jeff Cronon Fund
Margaret Roblin FundMargaret Roblin FundMargaret Roblin FundPam Callahan FundJeff Cronon FundStanfield Family ALS Research Fund
Pam Callahan FundFriends for Faye Fund
Name Fund
Research Sponsor ($1,000 - $2,499)
The Health Club at SouthpointeThe Law Offices of Fischer, Garon, Hoyumpa & RancilioThe Osprey FoundationThe Overaa Family GroupThe Philanthropic FundThe Reichert FoundationThe Schwartz Living TrustThe Stoddard FamilyTherese DeeganThomas and Elizabeth PhelpsThomas and Jordan KrausThomas and Robin ReveliThomas AustinThomas CallahanThomas ShamboThomas WagnerTimothy ThillTom and Brigitte ReichTom and Susan FischbachTroco Oil CompanyUS Energy CorporationValparaiso Country Clubs IncWalt & Linda TuckerWasserstrom CompanyWD and HH JenningsWendy Winnick-BaskinWilliam ColeWilliam Fick and Trench PlateWilliam JenkinsWilliam RobbinsWilliam ScottWings AirWirelessone
Pittsburgh Families EffortMary Lou Krauseneck Fund
John Yost Memorial FundCorey Reich FundMargaret Roblin Fund
Corey Reich FundJenny Stoddard Fund
Jeff Cronon Fund
Corey Reich Fund
Team CalhounJoe Shambo FundMargaret Roblin FundMargaret Roblin FundCorey Reich Fund
Stanfield Family ALS Research Fund
Rubin Kuznitsky FundAnthony Tucker FundHMS Host FundPhil Kramer FundMargaret Roblin FundCorey Reich FundOrange County FundKen Melanson FundCorey Reich FundMargaret Roblin Fund
Phil Kramer Fund
Name
Research Steward continued
Fund
2008 Calendar Year