We are focused on funding and carrying out projects that are not likely to be funded by existing for-profit and nonprofit entities in the Parkinson's disease community, yet are critical to the advancement of the science necessary to eliminate the disease and/or to the science of ameliorating its impact on the maximum number of individuals in the shortest period of time.

Recently Diagnosed Support Group Pilot StudyOur Senior Patient Advocate, Diane Cook, together with medical writer, Betsy Vierck, have started two support groups focusing on those recently diagnosed with Parkinson’s. These groups are educating those with Parkinson’s about the disease, resources available to them, and treatment options as well as providing valuable emotional support as these individuals meet the challenge of living with a chronic, progressive disease. A broad range of medical professionals are invited to participate in these informed discussions among patients, caregivers and the medical community. This effort has earned the support of the Colorado Neurological Institute, a National Parkinson Foundation Care Center and Neurological Center of Excellence, as well as the Parkinson Association of the Rockies.

Less that 30% of individuals with Parkinson’s see a movement disorder specialist, a neurologist with specialized training in diseases like Parkinson’s. The result is that many of those recently diagnosed do not have access to the latest research and/or therapy. Support groups play a crucial role in information dissemination to those seeing general physicians or neurologists. The focus is on taking charge of the disease because intervention, positive action and employing neuroprotective strategies at this early stage can have a significant impact on the progression of the disease as well as symptom reduction. Since depression can frequently accompany the onset of Parkinson’s, the proactive dimensions of the support group are particularly important.

Creating a National ModelThrough the input of members of the pilot support groups, consultation with medical professionals at the Movement Disorders Center of the Colorado Neurological Institute, and other Parkinson’s experts, Diane and Betsy are designing a national model for support groups focused on the recently diagnosed. They will be presenting their abstract on the model at the 2nd World Parkinson’s Congress in Glasgow in October 2010, where they will also have the opportunity to obtain input from and exchange ideas with other delegates, both medical and community-based.

The model will contain the following components: (1) a clear set of objectives; (2) a content presentation structure for how to present the content that will help people positively face their current disease challenges, without overwhelming them with issues pertinent in the later stages of the disease; (3) curriculum and content outline; and (4) suggested mechanisms for providing on-going advice and feedback. Creating such a national model will result in these groups being available to the maximum number of Parkinson’s patients across the US.

Exercise as Protective TherapyDeveloping research shows that regular exercise should be considered a primary therapy to help Parkinson’s patients:

  • Minimize further cell damage
  • Decrease the loss of cognitive skills
  • Increase muscle control and build muscle strength
  • Improve balance and coordination
  • Reduce depression

Questions remain, however. What type of exercise? How much? How long? How intense? How long do the effects last? Exercise is not routinely mentioned as part of a treatment plan–at diagnosis, or throughout the course of the disease. ProjectSpark is moving forward in this critical area by engaging in productive dialogue with a cross section of diverse experts and foundations. The intent is to see if there are specific leverage points where a “Spark” can make a difference.

Clinical TrialsThis ProjectSpark effort is focused on finding ways to encourage Parkinson’s patients to participate in clinical trials. Successful clinical trials are critical to moving a potential therapy from the laboratory to the patient. We are convinced that this is both an area where we can make a difference, and an area where a difference needs to be made.

Despite the efforts of other foundations, to date only 1% of people with Parkinson’s volunteer for a clinical trial. 10% of all clinical trials in the US must extend their timelines because of a lack of participants. A number of Parkinson’s related foundations are working in this area and ProjectSpark hopes to identify powerful ways of identifying, encouraging and rewarding participants in clinical trials that would then be made available to these foundations and others.

Reducing Time & Cost of Bringing Parkinson’s Drugs to MarketProjectSpark seeks to help reduce the time and cost of brining Parkinson’s drugs to the patient. Drug companies and medical institutions spend hundreds of millions of dollars a year on Parkinson’s and other disease categories. The problem is that it can take up to 15 years and a billion dollars to bring a single drug to market. If ways can be found to concentrate that money earlier on the best drug candidates, the result will be patients more quickly receiving efficacious drugs to eliminate the symptoms of Parkinson’s, and hopefully to reduce or even eliminate Parkinson’s as a disease category.