Characterize Condition

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Don't neglect the impact of the characteristics of the condition. Advocacy organizations often try to emulate what has been successful for another organization, especially in fundraising. But the characteristics of the condition have a major impact on the strategies an organization can employ. An organization can multiply its chances for success by starting with an analysis of the condition itself, looking for the kinds of pressures and needs it creates for families or individuals. This can help clarify your organization's mission and set realistic expectations about the commitments that volunteers can make.

Some differences clearly impact an organization's ability to garner support. Early-onset, potentially lethal conditions, with high burden of care for the family members, make it much harder to retain teams of active individuals. On the other hand, there is a sense of compassion and urgency when children are severely affected. It is generally more difficult to rally support for late-onset conditions that affect individuals mildly. Immense amounts of money have been raised for research on very rare childhood conditions such as ataxia telangiectasia, while it is much more difficult for organizations associated with some much more common conditions to raise money.

Many parameters can be used to characterize conditions, and they can be most accurately expressed as continuums. A condition might fall on one end or the other, span a section of the continuum, or fall in several places at different points in the natural history of the condition. For the condition you are concerned about, mark or shade the bars accordingly. (Download a PDF form to help with this activity File:Worksheet1.pdf)

  • Age of Onset: Early to Late
  • Systems Involvement: One to Many
  • Intensity: Episodic to Chronic
  • Availability of treatment: Low to High
  • Effectiveness of treatment: Low to High
  • Burden of Care (time/effort): Low to High
  • Burden of Care (financial): Low to High
  • Disabling Effect: Low to High
  • Life Threatening: No to Yes
  • Incidence/Prevalence: Rare to Common
  • Psychosocial Involvement: Low to High

Specialists

List the specialties of clinicians that treat affected individuals, and think about the relative involvement of different specialists. For example, in phenylketonuria (PKU), affected individuals may be diagnosed by a geneticist or genetic counselor, and see a pediatrician regularly as children, when their growth and general health status are being monitored. They may also have skills testing by a psychologist or learning specialist. Throughout their lives, however, their most frequent contact may be with a dietician or nutritionist, for nutrition education early on and for support and advice throughout life.

Clinical Specialists List: PKU

Medical Geneticist (M.D.)

Dietician/Nutritionist

Psychologist/Learning Specialist

Genetic Counselor

Note that this is not a complete list of every provider an individual with PKU will ever see. A woman with PKU who becomes pregnant, for example, sees an obstetrician for routine pregnancy management. However, these are the specialists she will see during her life for PKU management.

Now list the research specialists involved with your condition and anything you know about their research projects. For example, PKU is treated with a diet very low in phenylalanine (a component of protein), typically by replacing the majority of caloric intake with a formula that includes the rest of amino acids that protein-rich foods contain. But researchers are examining other ways to approach PKU so individuals can eat normally with their friends and family, including trying to get the enzyme missing in PKU into the body using implants or other means.

Research Specialists List: PKU

Geneticists

Metabolic Scientists

Pharmaceutical Scientists

Nutrition Scientists

Epidemiologists

If you don't know the kinds of researchers that might be interested in your condition, it may be appropriate to skip this step, especially if you have a specific ”and clinical or support-focused mission for your organization. However, ultimately you may find that research connections become important as your organization grows and develops its service to your community.

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