Board of Directors

We would like to expand our board of directors to include members or friends who have additional skills/experience that will bring us into the future. Our board is a working board that meets monthly via chat, typically on a Sunday evening, and is in frequent email contact throughout the month. Each board member takes responsibility for projects or a specific area of our program. The amount of time required varies depending on the project or area and often commitments wax and wane over the course of the year. The new board members do not need to be affected directly by cavernous angiomas. However, we understand that board members who are affected by cavernous angiomas or are caretakers may need to pull back at times because of illness. Our bylaws indicate that board members are elected for three-year terms, but obviously, one may resign earlier if circumstances warrant. The position we would like to add include:

1. Development – we are in the midst of developing a strategic plan that will carry us through the next 3-5 years. We need an individual who can help us develop the relationships with funders that we will need to bring our plans to fruition. Ideally, this would be a person who has previous experience in the non-profit sector obtaining grants (foundation, corporate, and government), developing annual campaigns, and guiding volunteers through the process of planning fundraising events. While we would love to have someone with experience in all of these areas, realistically, we would be happy to work with someone who has any one of these experiences. This person should not feel that they need to do all the grantwriting/fundraising themselves, but should be active in encouraging and identifying volunteers who can take roles in these activities. This would mean writing articles for the newsletter and making announcements on our Community Forum and listserv as well as making personal contact with volunteers.



2. Advocacy – we are anticipating creating and expanding our relationships with government. As you read in the “Advocacy” article in this issue, we are already beginning to work with NINDS and with the New Mexico state government. We also have invitations to teach the biotech industry and the pharmaceutical industry about our illness through their advocacy organizations BIOS and PHRMA. We are looking for one or more individuals with advocacy experience and/or a strong marketing background who can help us to develop relationships with government and industry to increase both research into treatments for CCM and services for those affected. Again, this would involve developing a volunteer base as much as making actual contacts with government/industry leaders.



3. Science – as our involvement in research grows, we are looking for someone who can help us to identify the best course for us to take to expedite the search for a cure. We are looking for someone who has knowledge of the steps necessary for drug development, who can keep up with the literature of molecular biology, and who can help us identify researchers or young investigators in related fields with whom we should try to form relationships. This person may become involved in evaluating BioBank requests from researchers and in evaluating researcher grant requests should we be in a position to offer such.



4. Public Relations – we are looking for an individual who can increase visibility of our illness and organization among the public through the media and other awareness campaigns.



5. Relationships with the medical community – we are looking for someone who can work with volunteers to develop programs of outreach to the medical community so that they become familiar with our illness, with our organization as a resource, and with our BioBank. This could include participation in medical conventions, developing a section of our website for clinicians, producing/distributing literature, and helping to organize grand rounds. Ideally, this individual would have a medical background.



6. Event planner – our family conference is a major undertaking each year, but many of the tasks can be done from a distance and do not vary much from year to year. We are seeking someone with event planning experience who can coordinate, with local volunteers, national family conferences and any future regional conferences we may plan.



7. Volunteer coordinator – this individual would help develop our volunteer base, keep track of volunteers, and connect individuals with the appropriate coordinator for the activity they have chosen.

Other Volunteer Opportunities

Perhaps a Board of Directors position is a little much for you take on right now. We have many other opportunities. As you read above, almost every new board position will require a group of volunteers to support the activity. Please consider volunteering in any of above categories. In addition, we have the following needs:

Simple fundraising

One of our most effective fundraising tools has been to have members send a letter to their family and friends letting them know about Angioma Alliance and the illness and including a donation return envelope. Friends and family are often looking for a way to help but don't know how. This can be particularly effective during the holidays when many individuals are making their end of year charity donations. We can provide a sample letter and donation return envelopes for your use. Other individuals have applied to their local private foundations for grants and have always been successful. This may involve sending only a letter and following up with a phone call. While local foundations do require a local individual to spearhead the request, we can help you to identify foundations in your area and compose the request letter. We are also always grateful for anyone who puts in the time and energy to organize a local fundraiser such as a charity dinner, party, auction, or walk-a-thon. These events bring our illness into the public eye as well as raising money for our work. If you are planning an event, please let us know at least a month ahead so that we can be sure to be registered as a public charity with your state.

Peer Support Volunteers

As you read in this issue, we have begun a peer support program. We are seeking volunteers to serve as peer support volunteers. Volunteers must have been living with a diagnosis of cavernous angioma or been the caretaker of someone with cavernous angioma for at least 2 years. Peer support volunteers should have about 2 hours a week to give to this activity. Most contacts with the newly diagnosed will occur over the phone or via email and the peer support volunteer can identify both the method of communication and the time of day that is most convenient for them to participate. We are in particular need of: 1) individuals who are caretakers of individuals with cavernous angiomas (spouses/partners, parents of affected adults or children); 2) people who have had a longer term recovery from surgery or a bleed that have experienced physical and/or occupational therapy; and 3) people with the common Hispanic mutation.

Website "monitor"

Someone who will keep an eye on our website to make sure our material remains up-to-date, that our links are active, etc. You do not need web design skills – just and eye for detail and some time to review the site monthly.

Convention booth staff

When we exhibit at medical conventions we need individuals to help staff our booth during the events. This requires individuals with good communication skills who are willing to learn enough about cavernous angiomas and Angioma Alliance to answer basic questions. The ability to speak Spanish or Portuguese would be wonderful, but is not required. In the first half of 2007, we have the potential to exhibit in San Francisco in February and in Boston in April.

BioBank helpers

We would like to develop relationships with surgeons throughout the country so that we can be proactive when one of our members has surgery and would like to donate tissue to the BioBank. In order to do this, we need individuals who will talk to their surgeons, whether or not they actually had or will have surgery, to let them know about the BioBank and pass on materials.

Website Maintenance

We are searching for someone who can take on responsibility for maintaining our Portuguese site. Although knowledge of Portuguese is not necessary, it is helpful. The volunteer will be assisted by the staff of Dr. Jorge Marcondes’ CCM research lab in Rio de Janeiro, all of whom are fluent in English.

Organizing a local event or dinner party

We always welcome help with fundraising. Our fundraising committee chair, Liz Neuman can help you to find a project that fits with your time and interests. Sample ideas include organizing a charity run or motorcycle ride, coordinating a group rummage sale, or hosting a benefit dinner or party in your home or elsewhere.

Grant Writer

We are engaging in several activities that warrant applying for foundation grants. We would greatly appreciate the help of a grant writer to create proposals.

Corporate giving

We need corporate sponsors for our upcoming family conference. If you have contact with a corporation that might be willing to become a sponsor at any level from $500-$25,000, we would love your help in soliciting them. Please contact us for a list of sponsorship opportunities and benefits.

Outreach to people with CCM who are in the news

As a result of Google news alerts, we’re learning about more and more people with CCM through news stories. We would like someone to try to make contact with these individuals in order to tell them about us. It may take some sleuthing to obtain contact information. If the individuals are famous (lately there have been a professional boxer and a professional cyclist in the news), we’d also like to approach them to see if they might be interested in helping with public awareness of CCM.

Family Conference Volunteer

Our family conference will be in Santa Fe this year, and if you are willing to help either before or during the event, we’d love to hear from you. We would need help with registration, photography, assembling binders, and a range of other tasks.

Celebrity Spokesperson

Do you have contact with a celebrity who might be willing to become a public spokesperson for Angioma Alliance and CCM awareness? We need your help to identify and approach such a person.