Angioma Alliance: Final Report
From WikiAdvocacy
Angioma Alliance’s focus in customization of the Does It Run In the Family? toolkit was designed to be culturally sensitive to the community, educate the community on the practical applicability of genetic family health history, and provide basic information about the disease. To have sufficient booklets for the outreach efforts 2000 sets of booklets were printed. This proved to be far more than necessary within the time frame of the grant, but distribution is expected to continue for a long time. There were four planned distribution and outreach efforts:
- The booklets were to be introduced at a local clinic that served as the health service provider to the economically challenged in the city. The booklets were used by a program assistant to explain genetics and family history to the potentially affected or to already diagnosed individuals who would then be treated in the clinic. The assistant would train others at the clinic to use the booklets to explain genetics and cavernous angioma to patients. Over 50 sets of booklets were handed out.
- The Health Department of the state of New Mexico worked with Angioma Alliance to develop a fact sheet for physicians. As part of the fact sheet, an order form for free copies of the booklets and brochures was included. The fact sheet was distributed through the NM medical society newsletter and directly through the Health Department. At least 1000 sets of booklets were anticipated to be ordered through this mailing. As it turned out, there was not a single order for booklets using this approach.
- Cavernous Angioma Awareness Week was held in Santa Fe. It included an evening patient seminar (35 attendees); a press conference awarding local, state, and federal officials recognition awards (60 attendees); a media campaign (a one-hour radio interview, a TV health news feature, newspaper coverage, and radio PSA’s); meetings with two local health foundations; and a lunchtime training program to the health providers at La Familia clinic (25 attendees). 300 booklet sets were distributed throughout the 4 in-person events.
- The program assistant trained the genetic counseling department and the pediatric neurology department at the University of New Mexico in the use of the booklets for their newly diagnosed families. 200 sets of the booklets were left in these departments. This was so well received that other departments in the medical complex began calling for booklets of their own to distribute. Most notably, the Child Life department in the hospital got wind of their existence and asked for 100 sets.
Angioma Alliance had several additional opportunities to distribute the booklets that had not been anticipated by the original grant proposal:
- In 2 New Mexico health fairs another 100 sets of booklets were distributed. The first fair was in Albuquerque and was part of La Tierra Sagrada Foundation’s annual end of year celebration. The second was a weekend women’s health fair conducted in a Santa Fe mall.
- A Smart car that is now parked in a Santa Fe mall will be auctioned off. Tickets can be purchased at the counter of the mall’s pharmacy. The booklets have been made available to the pharmacy and 100 sets have been distributed this way.
- Angioma Alliance has been cold-calling other physicians’ offices in the Santa Fe area to drop off booklets for their use (25 sets per practice).
- Angioma Alliance is at the early stages of distributing booklets through the public library system in Santa Fe. The hope is to develop a formal display that will call attention to the literature and receive permission to install it, at least temporarily, at several branches. Right now the literature at two libraries is mixed in with their community literature displays.
The grand total distributed to date is approximately 1050 sets of booklets.
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