HISTIOCYTOSIS ASSOCIATION INC

The objectives of the Research Program are to fund worthy scientific research projects, educate physicians and scientists, encourage and support symposia into histiocytic disorders, directly participate in research projects, and encourage publication of scientific information.

Over the past 20 years the Association has funded over 4.5 million dollars in research pertaining to histiocytic disorders.

Part of the mission of the Histiocytosis Association of America (the Association) is to identify and address the need of histiocytosis patients and their families. In doing so, the Association engages in a number of efforts to assist Association members in dealing with the unique circumstances of having a rare disease. Information available regarding histiocytosis, its diagnosis and treatment is very scarce. When individuals contact the Association for the first time, whether it is by phone or through the website, they are provided with an Educational Resource Package that guides them through the stages of getting to know the disorder. The package is customized according to a patient’s exact diagnosis to provide the maximum amount of appropriate information available.Each year, Association volunteers organize awareness-raising events in an effort to educate their friends, family, colleagues and neighbors about histiocytic disorders, diseases that are virtually unknown in most communities. Arranging these events not only raises funds to support Association programs, it provides Association members with an incredible feeling of empowerment. Through distributing educational materials and having Association representatives in attendance, these events spread the word about histiocytosis to entire communities while educating the public about the various programs of the Association.   Patients of histiocytosis and their families often feel very alone because the disease is so rare, its effects so varied, and the amount of information so scarce. To help alleviate the pain of feeling isolated, the Association sponsors Education and Outreach Meetings throughout the United States.  Because histiocytosis is so rare, it is often difficult to impossible to locate others diagnosed with the same disease. One of the only ways to do this is via the Internet. In order to provide a means of linking patients together, the Association created its website back in 1996, making it one of the first nonprofit organizations to host an online center for its members. Activity on the site grew rapidly, especially in the message board area, where patients and families could connect directly with others engaged in the same daily struggles of coping and managing a rare disease.In 2006, the Association website received a complete makeover and now features enhanced, threaded message boards for easier communication, extensive educational materials and references, a personalized “Faces of Histio” storybook area, volunteer opportunities, a Frequently Asked Questions section, and many other powerful resources.These one-day meetings provide Association members with the chance to learn about the latest findings on the treatment and research of histiocytosis. They are finally afforded the opportunity of asking questions and having them answered by a true expert. And, perhaps most of all, they can come together with others facing similar situations who understand their unique position.Medical experts in the field of histiocytosis speak at the meetings and inform the attendants of the latest research findings and treatments. A question-answer period follows the presentations and provides families and patients with the opportunity to ask whatever questions they have in relation to the disease. Mr. Jeffrey Toughill, Association founder and President, moderates these meetings. Expert physicians from the host area are typically asked to speak at the meetings; however, the scientific members of the Board of Trustees are always available for presentation.Locations are selected by the number of requests that come from a particular geographic area, or by the concentration of patients in an area. The number of meetings varies per year. 2007 welcomed the first National Conference on Histiocytic Disorders held in Orlando, Florida, from August 1-3. The 2nd National Conference on Histiocytic Disorder is planned for August 2009 in Milwaukee, Wisconsin.More is being discovered about histiocytosis every day; and while the number of medical professionals who are educated about these diseases continues to grow, there are still many that know little to nothing about diagnosis and treatment. Patients often find themselves searching for a physician that knows more about the disease than they, as a patient, know themselves. In order to meet this need, the Histiocytosis Association developed the Histio Physician Referral Network (HPRN) that provides patients with the opportunity to locate a physician in their area that has experience with histiocytic disorders.All physicians included in the Network have expressly agreed to have his/her name shared with patients seeking medical attention through the Histiocytosis Association. In addition, each physician has specifically noted the type of patient(s) he/she is willing and/or able to treat.Patients utilizing the Network are provided with a minimum of three physician contacts, usually based on proximity to the patient’s location or on a location of the patient’s choice. Currently, the Network can be used by calling the Association office, however, plans are being made to make this service online as well.In 2007, more than 850 people made initial contact with the Histiocytosis Association; nearly half of those new contacts utilized the service of the Network. People that were members of the Association prior to 2007 also use the Network to locate a new physician.Members of the Association come from all around the United States and World and those members each face unique problems and need direction for assistance with them. The Association has developed resource materials for members that include ones based on their individual State, as well as National services available to members around the United States.

Each year, Association volunteers organize awareness-raising events throughout the United States. By hosting these events, fundraisers educate their friends, family, colleagues and neighbors about histiocytic disorders, diseases that are virtually unknown in most communities. Arranging these events not only raises funds to support Association programs, it provides Association members with an incredible feeling of empowerment. Through distributing educational materials and having Association representatives in attendance, these events spread the word about histiocytosis to entire communities while educating the public about the various programs of the Association.Hosting a fundraising event can be fun and rewarding.  Here are some things to think about while you consider the possibility of becoming a fundraiser:

The principal goal of the volunteer program is to recruit, retain and recognize highly valuable volunteers by providing them with meaningful work assignments.   Participating volunteers contribute to the Association’s success by providing the talents and resources that become available through a formalized volunteer program. Association volunteers perform important tasks and receive recognition for their contributions in a variety of forms. The volunteer program benefits the Association’s members by enhancing the its ability to fund scientific research that results in advancements in medical treatment.  In addition, the program enables the Association to offer patients and family members opportunities to become involved in the organization’s work. A well-structured, high-quality volunteer program can be extremely beneficial to any organization, as volunteers often possess various talents, skills, and abilities that an organization otherwise would not have at its disposal. Although volunteers offer their skills for free, volunteers are not free. It is the philosophy of the Association that volunteer programs thrive when volunteers are provided with clearly stated goals and expectations, properly trained and supported in their work, acknowledged for their contributions, and recognized appropriately. When a volunteer program incorporates these elements, staff and volunteers can then work together effectively to achieve an organization’s mission.   It is in the best interest of non-profit, charitable institution, such as the Association, to manage formal volunteer program. The presence of a formalized program demonstrates that an organization understands the importance of, and has proper respect for, a volunteer’s time and efforts. As the Association’s volunteer program operates based upon a clear set of guidelines and expectations, which are communicated to volunteers during their initial interview and orientation. Because volunteers’ roles are well defined before their service to the organization begins, they are assured (I don’t know about this phrase) that their experience of working on behalf of the Association will be as rewarding as possible. For the aforementioned reasons, the Association’s formalized volunteer program was officially launched on April 20, 2009. Since its inception the program t has recruited, and maintained, 36 active volunteers at the time of this writing.   As noted above, the histiocytic disorders are rare. As a result, histiocytosis patients - and therefore Association members – are scattered throughout the United States. A smaller number of members live in different countries around the world. Almost all Association volunteers were members of the organization prior to beginning their service; consequently the majority of them are located in different areas across the country, while a few live outside of the United States. The volunteer program aims to address needs that are identified through feedback from the Association’s members. No one knows what these are better than members themselves.  Therefore, the organization feels that recruiting its members to serve as volunteers is the most productive way to maximize its resources.  Once these needs are recognized, the Association then draws upon its volunteer resources to complement its staff-led efforts in those areas. The organization’s volunteers improve the lives of its members by creating and managing support groups and networks, raising awareness among physicians so that earlier diagnoses can be made, and participating in many other important activities. By operating a formalized volunteer program built upon the central tenets of recruitment, training and retention, and recognition, the Association makes it possible for its volunteers to contribute in vital ways to the health and wellbeing of its members.