What does transparency mean to ALS TDI?

ALS TDI was founded in 1999 as a 501(c)3 nonprofit organization dedicated solely to the discovery and development of effective treatments for ALS.  It was inspired following Stephen Heywood’s diagnosis with ALS at the age of 29.  From there, hundreds of families and thousands of supporters have provided support to the Institute.  Some organize events or funding appeals, and some serve on our board, while countless others help drive our mission forward in countless other ways. We are honored to have earned the support of so many people and families from points across the globe.

 

ALS TDI knows that its supporters, like the general population, receive many requests for support from nonprofit and community organizations each year.  We believe that our commitment to transparency regarding how we raise and spend the donations we receive is, in many ways, unmatched by others.  This page was created to highlight our commitment to transparency and efficiency.  It is also meant to directly address some common questions that we hear from current and potential supporters.  We hope that this statement will empower people to understand more about our approach to executing our mission: the discovery and development of effective treatments for ALS.

 

From the beginning, ALS TDI has taken the position that it should be as open and transparent in its operations as possible.  Embodying this value, the Institute has an open-door policy and invites PALS, CALS and the entire community to visit its facilities in Cambridge at anytime.  Knowing the reality of this disease, we also open our virtual doors through an extensive series of group conference calls, webinars, and webcasts with our research and leadership team throughout the year.  ALS TDI also established and has maintained the ALS Forum online for nearly 10 years now, allowing PALS, CALS and researchers from across the globe to interact in new and innovative way with each other.  With the advent of social media and the connectivity that it has allowed to flourish throughout the community, new opportunities for openness and transparency have emerged that we are engaging in more each year.  We also spend a great deal of time “in the field” meeting with people one-on-one and in groups during our informational sessions and our annual Leadership Summit.  Never, for any of these events has ALS TDI charged admittance.  We have made it a priority from our beginnings to provide the ALS community greater access to our research team and their decision making process.  We believe that these programs and efforts stand above all others.  We are also committed to continuing to look for new ways to make our science – and others’ – approachable to the entire community, which led us to launch ALS Today in December 2011.  We also launched a mobile version of our website in 2012 to help make it easier to navigate using a newer generation of communication devices.

 

From the start, we have always taken the position that the ALS community deserves to know exactly what we are doing at TDI to advance our mission: end ALS. We have taken a number of steps from the start to be have an open approach to our drug development process with everyone, regardless if they financial support TDI. This is accomplished in a number of ways, including a regular updates to our pipeline online, regular webcasts with our research team outlining our progress, and during our free annual leadership summit. In addition, ALS TDI invites the community to visit its Institute anytime in Cambridge to tour the facility and meet with its team.

 

Included in our annual filings, such as our annual report and 990, we speak a great deal about the fundraising programs we operate to support our drug development efforts.  ALS TDI fundraising meets the highest standards set by the American Association of Fundraising Professionals.  From day one, we have worked with those who choose to support our work through fundraising activities to keep the costs of fundraising to the lowest level possible.  Because of this partnership approach with the ALS community, we are able to keep the amount spent on events and fundraising importantly low.  The less we need to spend on fundraising, the more that is able to be directed to the discovery and development of effective treatments for ALS. There are more than 120 “third-party” fundraising events that occur each year in support of our drug development program.  Each is unique and ALS TDI provides support in a variety of different ways to all.  In addition, ALS TDI spearheads several annual events on its own; including the Cure is Coming 5k, the Tri-State Trek and White Coat Affair gala, among others. Regardless of the type of event, no compensation or financial provision of any kind is paid to any volunteer or non-staff fundraiser.  All paid staff, including every member of our fundraising team, are listed on our website.

 

We also believe that financial transparency is equally as important.  For the last several years, ALS TDI has been recognized by the donor-driven organization Charity Navigator as the top rated ALS organization overall for financial health, transparency and accountability. In fact ALS TDI out-ranks most medical research nonprofits in the USA according to CharityNavigator’s most recent ratings.  Every year since it started, ALS TDI has published its annual report and IRS Form 990 on its website).  We have, since the beginning, had our financial statements audited by well-established firms that specialize in conducting audits of nonprofit organizations.  Our current auditor is Alexander, Aronson, Finning & Co., P.C.. The audit report has been available for inspection since our founding.

 

Our board of directors consists of 12 members, including our chairman, Augie Nieto, who is a person living with ALS.  There are also 5 family members of PALS on our board. There are 2 world-renowned ALS scientists on our board as well. The remaining membership is made up a group of innovators from a cross sector of other industries.  No voting member of the board of directors at ALS TDI is compensated for his or her services as a director.  The full board meets at least 4 times of a year and reviews the strategic direction of ALS TDI and provides guidance to the Institute’s executive team.  The board reviews most everything a normal corporate board would, including progress on mission, proposed budgets, tax and other filings as well as financial statements.  A full list of our board members is provided on our website.