2005 Annual Report of the

Transcription

1 2005 Annual Report of the National Meningitis Association Inc. January 27, 2006 National Meningitis Association, Inc Chestnut Road Lexington Park, Maryland EIN

2 2005 Annual Report of the National Meningitis Association Inc. 1 Introduction This is the third annual report of the National Meningitis Association, Incorporated (NMA). The National Meningitis Association initially was founded in February 2001 as the Meningitis Prevention and Awareness Children s Trust, Inc. in Lexington Park, Maryland. The organization received initial approval from the Internal Revenue Service to operate as a 501(c) (3) public charity in August In August 2002, the name was changed to the National Meningitis Association, Inc. to underscore the national focus of the organization as reflected by its founders and volunteer board members and the nature of the programs established to promote national awareness of meningococcal disease and prevention approaches. 2 National Meningitis Association Mission Statement and Goals The primary purpose of the National Meningitis Association is to spread our message of Vaccination Education - Protection regarding bacterial meningitis and meningococcal disease in particular. Our mission statement is To help educate families, medical professionals, and others about the dangers of bacterial meningitis and prevention approaches to the disease. Until meningitis is completely eradicated, we are dedicated to increasing awareness, promoting prevention, supporting families and survivors who are stricken by this deadly disease, and searching for new ways to reduce the incidence of meningitis in our country. 3 Operations NMA operates as an all-volunteer public charity with a national focus. All funds are raised primarily through unrestricted educational grants, individual donations, and fund-raising events. The organization has an executive director and four deputy directors. Day-to-day activities are conducted primarily through , toll-free telephone services, a website ( and other written correspondence. The organization also has volunteer administrative support personnel in Maryland who assist with these activities as well as volunteer phone support personnel around the country who help respond to telephone queries regarding the disease. There are approximately 200 telephone calls and 3000 web site visits per month from all over the United States as well as Canada, UK, Australia, and several other countries. 2

3 The web site ( is maintained and updated on a daily or weekly basis depending on need, driven by news of meningitis cases or updates on public health policy and legislation. The focus is recent news stories from across the country on meningitis, downloadable information presentations on the disease and prevention, information on legislation in the United States on meningitis, and links to other sites that have information on meningococcal disease as well as other forms of meningitis. Board members are elected for two years and may serve consecutive terms. Formal 2005 board meetings included the following: March 10-12, 2005 Las Vegas, NV June 4, 2005 Washington, D.C. September 30, 2005 San Francisco, CA The founders and board members are: Lynn Bozof Executive Director Georgia Mike Kepferle Director Maryland Carolyn Waghorne Director Texas Candice Benn Director California Nancy Springer Director New York In addition, an all-volunteer, non-voting advisory board was established this year. The initial meeting was held in New York City on November 5, NMA Programs The major focus of 2005 for the National Meningitis Association continued to be to raise awareness levels across the country regarding meningococcal disease and available prevention measures primarily intended to reach adolescents, young adults, and their parents as well as members of the media, educational institutions, public policy officials, and the medical community. In particular, due to government approval of a new conjugate vaccine, Menactra, NMA was instrumental in increasing the focus on younger children, including year olds and high school students. All the programs appeared to be highly successful based on the telephone and web responses received from across the country as well as feedback from television and radio markets regarding our public service announcements. 4.1 Direct to Parent Education Program This year, due to a reduction in grant funding, NMA modified the focus of the direct to parent mailings to send information to those states that had weak or no legislative or administrative efforts to increase meningococcal immunization and awareness. This meningitis education program involved sending out 600,000 post card alerts in June directly to parents and guardians 3

4 of high school students in twenty-one states. The message was to inform parents about the disease, the increased risk to adolescents, and the availability of the vaccine. This is still considered the highest impact program for dollars spent because of the ability to put the information directly in the hands of the parents in order to ensure that they had the opportunity to educate and immunize their children. 4.2 Moms on Meningitis (MOMS) Program The MOMs program involves the mothers of children who were attacked by meningococcal disease. The mothers are volunteers who are given media training to help them communicate effectively in order to increase their ability to improve education efforts about the disease. The MOMs participated in developing outreach programs across the country through various media including radio, television, magazines, and newspaper stories. In addition, video background rolls of the mothers and disease facts were developed for distribution to media outlets as an additional resource. This year we continued to expand our MOMS program to include mothers impacted by this disease in 22 states. These MOMS focus on outreach in their particular regions including Arizona, California, Colorado, Florida, Georgia, Illinois, Iowa, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, New Jersey, New York, North Carolina, Ohio, Oklahoma, Texas, Virginia, Wisconsin, and Wyoming. 4.3 Together Educating About Meningitis (TEAM) Program The TEAM program continued to help raise awareness about meningitis through participation in various media interviews and presentations by our incredible group of young survivors. The TEAM members include survivors from New York, Iowa, Pennsylvania, Massachusetts, and Texas and are featured on our new TEAM web site. 4.4 Television and Radio Public Service Announcements (PSAs) This year we developed a new series of 15, 30, and 60-second radio and television public service announcements entitled Parents Against Meningitis: What Happened Shouldn t Happen The PSAs were distributed to radio and TV stations across the country. Along with the PSAs, we provided various stations with background video filmed with the MOMS, TEAM members, and medical advisors. Current feedback from various media markets is that the PSAs registered nearly 400 million impressions across the country. NMA s PSAs are ranked in the top 12% of PSA Nielson ratings and reflect the equivalent of over $3 million in advertising. In addition two regional PSAs were created, one in Georgia with Bobby Cox, the manager of the Atlanta Braves and the other in California with Mike Scoscia, manager of the Los Angeles Angels. 4.5 Meningitis Case Response Program As part of NMA s efforts to stay abreast of all meningitis cases in the United States, this program involves daily monitoring of national and local news stories on meningitis, outreach to stricken families, and response to media needs for information. Arrangements are made with local and national media to interview various NMA members as appropriate or refer the media outlets to other NMA material. Additionally, NMA volunteers provide outreach to those families who want or need support as they deal with the impacts of dealing with the devastation of meningitis in their lives. 4

5 4.6 Medical Organization Collaboration and Support This year NMA collaborated with the National Foundation of Infectious Diseases (NFID) in development of a major project called STOP Meningitis which included all the major medical organizations interested in meningococcal disease prevention. NMA was the only parent nonprofit organization involved in this project. A link to the program is maintained on the NMA web site. In addition we participated in several major health-service conventions to help raise meningitis awareness and support efforts. These included the American Academy of Family Physicians convention in San Francisco, CA and the American Academy of Pediatrics convention in Washington DC. NMA featured a leading speaker at the National Association of School Nurses (NASN) convention in Washington DC, and participated as well in the National Association of Pediatric Nurse Practitioners convention in Arizona. In all the convention venues, NMA set up information booths, distributed material, met with doctors, nurses, and other interested parties, and mailed brochures to medical professionals who signed up to receive our information pamphlets. 4.7 Centers for Disease Control and Prevention (CDC) and Department of Health and Human Services (HHS) Meetings NMA members participated in and testified at the CDC meetings in Atlanta to address the CDC s Advisory Committee on Immunization Practices regarding the recommendations for the new conjugate vaccine. The organization was also invited to participate in the United States HHS department s National Vaccine Advisory Committee s workshop in Virginia, June 2-3. This was the initial meeting to address focus areas for introduction and approaches to education for the new series of adolescent vaccines such as Menactra, which is a major change in the approach to immunization process in the United States because of the focus on adolescents and young adults. 4.8 Parent Teacher Awareness (P.T. A.) for PTAs Program We have expanded our PTA program which started last year with a pilot effort in Georgia. In 2005, NMA volunteers participated in PTA conventions in five states, including Illinois, Connecticut, Texas, Georgia, and New York as well as exhibiting at the National PTA convention in Columbus, Ohio. The program has been developed because PTAs provide a strong platform for NMA to educate parents, school officials, pre-adolescents and adolescents. It reaches parent influencers through parent-to-parent communications and encourages education regarding the disease and prevention among parents, educators, and school officials. Our PTA program toolkits are designed to educate parents of middle school children in particular about the disease and the vaccine for pre-adolescents and adolescents. The information kits can be downloaded directly from the NMA web site. 4.9 Web Site Development and Support A major effort to update the existing site was completed this year with links for media to rapidly access background information as well as incorporation of an expanded MOMS site and our programs, especially the PTA program. The web site is consistently ranked near the top of major search engines and includes the MOMs and TEAM web pages. 5

6 4.10 Meningitis Awareness Wristbands Thanks to a generous grant from the family of David Pasick of Wall, New Jersey, NMA launched a major awareness initiative using distinctive blue, silicone wristbands. Youth and adult sizes are available and can be ordered through the NMA web site. Nearly 15,000 wristbands were distributed in The wristbands are available for use by other organizations to help raise funds and awareness about meningitis Brochure Development This year the NMA brochures were re-designed to focus more on younger adolescents and to reflect the new vaccine recommendations from the CDC, AAP, and AAFP. Over 50,000 brochures have been printed and distributed, and both the English and Spanish language brochures may be downloaded from the NMA web site or quantities ordered from us directly Legislative Efforts NMA continues to work to educate legislators about the need for immunization and education. In 2005 several states expanded laws to include education programs beyond college students. Alaska became the 33 rd state to enact some form of meningococcal disease legislation. NMA volunteers and families have been actively involved in testifying or providing educational information for twenty of the states that have passed legislation over the past five years Victim Family Support Fund A new victim family support fund was established this year and funded with contributions from the Pat Kepferle Memorial fundraiser in Maryland in order to help provide assistance to families and victims of meningococcal disease. Although in its infancy, we hope to significantly expand this fund to provide meaningful support for individuals and families who are in need of more direct financial assistance. 5 Fundraising This year NMA re-registered in every state requiring fundraising registration to maintain our ability to conduct national fundraising campaigns. Fundraising efforts have included grant development, acceptance and participation in the federal government s Combined Federal Campaign, participation in several fundraising events across the country, as well as online donation buttons on our web site. We continued to receive unrestricted educational grants from sanofi Pasteur as well as a directed grant from the McKenzie Hartwig Foundation of Wyoming for development of a meningitis video in Other Administrative Costs Since NMA is an all-volunteer organization, administrative costs include such items as board meeting travel, telephone, web site, office supplies, and shipping and postage expenses. Administrative and fundraising costs are currently approximately 4% of the annual budget. 6

7 7 Audits and IRS 990 Filings In accordance with government regulations, NMA has submitted to an independent audit and has made all required federal filings for operations in Plans for 2006 The National Meningitis Association looks forward to expanding our meningitis education efforts focused on saving lives in conjunction with introduction of the new vaccine, Menactra, approved for 11 year olds and older. We are very encouraged with the potential for improved immunization protection and are working closely with the United States Centers for Disease Control and Prevention to assist in enhanced education programs and recommendations for targeted outreach to the nation s families regarding meningitis protection. We are applying for a second year of inclusion in the US Combined Federal Campaign to continue to expand our support base among government employees. This year we plan to continue to increase collaboration with various organizations including the National Foundation for Infectious Diseases (NFID), the National Association of School Nurses, the Immunization Action Coalition (IAC), Children s Hospital of Philadelphia (CHOP), the American College Health Association, Parents of Kids with Infectious Diseases (PKIDS) and others to ensure that all facets of our society are presented with clear, concise information on meningitis prevention and awareness. We are excited about the involvement of the newly-established advisory board and are extremely grateful for all the volunteers who work so hard to support our efforts. We continue to work to significantly increase our outreach and hope to expand our fundraising activities this next year to meet the needs of all our program goals. Some of our 2006 plans include: re-release of our new Public Service Announcement campaign for TV and radio, expansion of our PTA program to ten states, incorporation of a Little League outreach to educate families of over 800,000 children, expansion of our direct to parent mailing campaign, development of the meningococcal education video, development of a meningitis survivor kit to assist newly diagnosed survivors implementation of a MOMs education and support workshop, and continued, ongoing outreach through our established programs. Finally, we continue to look for ways to improve vaccine accessibility and affordability for all Americans through implementation of insurance improvements and government programs to cover the costs related to individual immunizations. Significant challenges still exist to ensuring every child is protected from meningitis through immunization as well as education. 7