National Tuberous Sclerosis Association Inc.

Filing Period

Jan 1, 2012 to Dec 31, 2012

Signed

Apr 22, 2013

Return Version

2012v2.1

Gross Receipts

$3,454,243

Mission

Major Activities

Activity 2

Family services develops programs and services that provide individuals with tsc direct access to the information, resources, and specialists experienced in the diagnosis, treatment and management of tsc. Through the network of 32 volunteer branches of the organization, called community alliances, local educational and support group meetings are held throughout the country. The ts alliance hosted 12 educational meetings and 20 gatherings held at community alliance locations during the fiscal year 2012. These meetings facilitated stronger connections with peers, researchers, and clinicians in the community and educated the tsc community about clinical trials, research and treatment options for those living with tsc. The department of advocacy and education supports families and individuals from all over the united states by providing support and information including direct during one-on-one meetings. In addition, volunteer clinic ambassadors supported over 153 individuals at tsc clinics in miami, fl; cincinnati, oh; columbus, oh; atlanta, ga; nashville, tn; birmingham, al; and denver, co.the director of advocacy and education attends individual education program (iep) meetings in person, through skype, and via conference calls to support families in getting educational services for their children. There are 18 advocate liaison volunteers, working in 18 states, to connect families to free educational advocacy trainings in collaboration with the states' parent training and information centers. Over the past year there have been more than 1,300 free parent trainings and webinars on educational advocacy offered to families dealing with educational issues for their children. There were also 4 educational situation videos developed and placed on the ts alliance website to support parents in getting an appropriate education for their children. There were 30 online chats held for siblings ages 8-13, 14-18, and adults to support issues siblings face on a daily basis having a brother or sister with tsc. A new sibling facebook page was developed to better serve this population. The director of education and advocacy also facilitates the adult task force, and held 9 monthly topic calls on identified issues of importance to better support adults living with tsc. The adult regional coordinator program was developed with 10 adult volunteers now supporting adults throughout the country. Finally, the ts alliance online social network through "inspire" helps to connect individuals and families dealing with tsc and get support from each other's experience. Presently the tsc population through inspire includes over 1,500 members from 69 countries as of december 31, 2012.

Activity 3

Public health education heightens awareness of tsc throughout the general public to broaden the scope of support and understanding beyond tsc individuals and their families. During 2012, the ts alliance produced three issues of its national magazine, perspective, which is mailed to more than 13,000 constituents as well as posted on the website. The ts alliance's website increases awareness and provides extensive education with 799,000 to 1.2 million hits monthly from an average of more than 9,250 unique visitors. The site's online mail list form continues to capture 50 or more new constituents every month. The ts alliance relies heavily on social media to educate constituents and promote new resources and events. Its facebook group boasts more than 5,000 members, while its twitter account has 600-plus followers. The ts alliance also provides public education through a series of regional tsc conferences; four were held in 2012 including washington, dc; houston, tx; los angeles, ca; and boston, ma. To increase public awareness, the ts alliance heavily promoted may as national tsc awareness month via its various social media and web properties, and it took the lead in promoting the very first tsc global awareness day on may 15. This included a radio media tour and audio release on tsc global awareness day with total outreach to 8,065,000 listeners on 2,007 networks and 2,015 airings and a window display in rockefeller center, new york city throughout may. With the fda-approval of the second tsc indication, the ts alliance broadened public awareness through outreach to press and participation in a second radio media tour reaching a total listenership of 3,913,000 with placement on 19 networks. In 2012, the ts alliance co-sponsored a report on epilepsy by the institute of medicine through our partnership with vision 2020, a coalition that focuses on epilepsy research, care, services, education, and advocacy efforts. This landmark study provides the blueprint for improving the outcomes for those living with epilepsy. A full report and recommendations can be found at: http://www.iom.edu/reports/2012/epilepsy-across-the-spectrum.aspx.

Filer

EIN

95-3018799