2016 Annual Report (PDF)
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IMMUNE DEFICIENCY FOUNDATION — 2016 YEAR IN REVIEW | 1 2016 ANNUAL REPORT A Year in Review Immune Deficiency Foundation 110 West Road, Suite 300 Towson, MD 21204 800-296-4433 www.primaryimmune.org [email protected] Why does IDF say THINK ZEBRA? In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras,” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. People with primary immunodeficiency diseases are the zebras of the medical world. So IDF says THINK ZEBRA! IMMUNE DEFICIENCY FOUNDATION — 2016 YEAR IN REVIEW | 1 Broadening Our Reach .....................................................................2 IDF Retreats 2016 . .3 IDF Education Meetings ..........................................................................3 IDF Outreach Initiative. .3 IDF Get Connected Groups . .3 IDF Volunteer Network ...........................................................................4 IDF Teen Program . .4 IDF Young Adult Program .........................................................................4 IDF Medical Programs . .4 National Primary Immunodeficiency Awareness Month (April) and World PI Week (April 22-29) ....................5 LivingwithCGD.org – The IDF Resource for Chronic Granulomatous Disease ...................................5 Advancing Research . .6 IDF PI CONNECT and IDF ePHR .....................................................................7 IDF PI CONNECT Research Forum ...................................................................7 PROMIS-29 Quality of Life Survey through IDF ePHR .....................................................8 United States Immunodeficiency Network (USIDNET) .....................................................8 IDF Survey Research .............................................................................9 IDF Medical Advisory Committee and IDF Nurse Advisory Committee .......................................10 IDF Publications ...............................................................................10 Dedicated to Future Generations . .11 Nationally Recognized. .12 Patient Advocacy ..............................................................................12 Navigating Health Insurance ......................................................................12 Peer Support. .12 IDF Friends - The Community Page .................................................................12 IDF Walk for Primary Immunodeficiency .............................................................13 Public Policy ..................................................................................14 IDF Advocacy Day 2016 ........................................................................14 Medicare IVIG Access Demonstration Project ........................................................14 Accelerate the Start of the Medicare SCIG Home Infusion Benefit ........................................14 Cadillac Tax . .15 Biosimilars ..................................................................................15 Affordable Care Act (ACA) Implementation . .15 Blood Safety ................................................................................15 Health Access Advocates .......................................................................15 State Advocacy ..............................................................................16 SCID Newborn Screening. .16 Private Insurance .............................................................................16 Leadership ................................................................................17 IDF Board of Trustees ...........................................................................17 IDF Staff Management Team. .17 IDF Medical Advisory Committee. .18 IDF Nurse Advisory Committee ....................................................................19 2016 IDF Core Service Corporate Sponsors .................................................20 2016 Revenue .............................................................................21 Statement of Activities ....................................................................22 Statement of Functional Expenses . .23 Donors ....................................................................................24 IDF Walk for Primary Immunodeficiency Teams 2016 ......................................51 IDF Walk for Primary Immunodeficiency Sponsors 2016 ....................................53 Mission Statement The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. 2 | IMMUNE DEFICIENCY FOUNDATION — 2016 YEAR IN REVIEW Broadening Our Reach Because primary immunodeficiency diseases (PI) are rare, connecting patients, families and healthcare professionals is critical. From presenting education meetings throughout the country, to creating programs specifically for teens and young adults to collaborating with healthcare professionals and raising awareness among the public, IDF works to sustain initiatives that build relationships within the community and provide them with the information and resources they richly deserve. IMMUNE DEFICIENCY FOUNDATION — 2016 YEAR IN REVIEW | 3 BROADENING OUR REACH IDF Retreats 2016 IDF Retreats are weekend gatherings for everyone in the PI community – patients, parents, siblings, partners and children. In 2016, we hosted 293 attendees in Boston, MA from June 17-19, which was the largest retreat ever, and 182 attendees gathered in Salt Lake City, UT from August 19-21. We had 26 states represented in Boston, with 41% first-time attendees at an IDF event, and there were 24 states represented in Salt Lake City, with 25% first-time attendees. Retreats are a great way to discover the latest information and develop better approaches to living with PI – all while having a good time with a wonderful community. Special programs for individuals with Chronic Granulomatous Disease (CGD) and their families were offered, as well as sessions dedicated to young adults, including one in Boston for all young adults and another in Salt Lake for young adults with Severe Combined Immune Deficiency (SCID). IDF Education Meetings Education is central to our mission, and each year IDF holds education meetings throughout the country. IDF has made a commitment to further enhance and increase the number of local education meetings throughout the U.S. Efforts have been made to partner with physicians nationwide to reach more patients and enrich the content of the meetings. In 2016, IDF hosted 27 Education Meetings and Family Conference Days, which are daylong meetings where local experts present medical and life management sessions to adults. Family Conference Days include a youth program for ages 5 and up. Through these meetings, IDF reached 1,764 individuals. We had over 141 speakers volunteer to present at the meetings. IDF Outreach Initiative The IDF Outreach Initiative expands the reach and impact of IDF nationwide. Through the initiative, volunteers serve as IDF Liaisons or IDF Get Connected Leaders to help IDF reach those in the PI community. IDF Liaisons connect and build relationships with healthcare professionals who care for individuals diagnosed with PI, as well as with clinicians who are likely to see these patients. IDF Get Connected Leaders increase connections between patients in their communities. These are exceptional opportunities for motivated individuals who want to make a difference for others living with PI. They understand the importance of education, understanding and encouragement in helping individuals live a fulfilling life with PI. IDF Get Connected Groups IDF Get Connected Groups are designed to connect individuals and family members living with PI in their local communities. The groups can occur at a local community room, library, coffee shop or other venues. They provide an opportunity for individuals to network and receive support in their local community. In 2016, each IDF Get Connected Group met 4-6 times on average in 16 different states. Through these meetings, IDF reached a total of 607 individuals. 4 | IMMUNE DEFICIENCY FOUNDATION — 2016 YEAR IN REVIEW BROADENING OUR REACH IDF Volunteer Network The IDF Volunteer Network is committed to supporting the mission of IDF. This nationwide network of dedicated volunteers serves to advance the reach of IDF in areas of strategic importance to the PI community. In 2016, our network of volunteers created awareness by distributing thousands of education materials and spoke to approximately 2,827 people during 86 visits to plasma centers. IDF Peer Support Volunteers offered one-to-one encouragement to 236 individuals. Approximately 300 new volunteers registered in the IDF Volunteer Connection Center. Some of these opportunities include: IDF Get Connected Leaders, IDF Liaisons, Office Support, Peer Support Coaches, Plasma Center Visitors, Walk Advisors, Walk for PI – Event Day Volunteers and Walk Planning Team Members. IDF Teen Program The IDF Teen Program, specifically for teens with PI, provides education and support while fostering leadership and advocacy skills for teens. The program encourages “It helped me become teens to live life to the fullest and creates opportunities for parents of teens in the PI more social with community to meet one another, learn about PI and discover