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Notes from a meeting with a Michael J. Fox Foundation staff member

I was lucky enough to get a one-on-one talk with a staff member of the Michael J. Fox Foundation (MJFF) this week, and she was lucky enough to stay for dinner and have some of the wife's Gazpacho.

The following are notes from memory that I wrote up after she left. They are in no particular order, just a stream of consciousness.

They have done a genetics/environment combination study. Evidently they did a study which found 11 markers when found in some combinations, increase the risk of PD if you are also exposed to some life factor (ie pesticide, brain injury, etc). Pure genetic PD is still considered rare, but a focus area of research, because treatments that arise out of genetics can be used for everyone. The genetics give clues to how the genes effect all PD patients.

They are focusing research on cures AND stopping/reversing progression. One other focus is developing a clinical test that determines not only if you have PD but your progression so clinical trials can have measurable results. Unlike the UPDRS, this would be an objective measure via blood work, brain scan, etc.

Stem cells are seen as longer term because they are more likely to cause harm so treatment has to be perfect. Big areas are genetics and protein based treatments. Big issue is delivery method to get past blood-brain barrier. One study is looking at DBS-like treatment using drugs instead of surgery. Another looks at using alternative receptors/transmitters to help control motor function as Dopamine production drops.

We also talked about how the science is funded and how they are changing it. Scientists receive grants for new ideas while pharma needs to make a profit, so they're trying to fill the gap between good new ideas that have no development behind them to show there is a profit in the future.

Hope the notes help and give to the MJFF.

Notes from a feeding workshop for parents of tube fed kids

Our daughter has been on a feeding tube since she was two days old and has had a mic-key button since she was about 6 weeks old. I went to a workshop for parents of kids with feeding tubes at Rady Children's Hospital in San Diego with Marsha Dunn Klein of Mealtime Notions around early 2007.

I added my notes as an info page. Some of the key points we took away:

  • Tube feeding should be social, like a meal time
  • Should be celebrating experience with food (touch, smell, etc, not just eating)
  • It’s not about how much at first

Hope the notes can help someone and if you have notes from a workshop or seminar that you attended that may help someone else, please feel free to add them using the Create an Info Page link.

Having insurance with a special needs kid doesn't mean your covered

I just had a quick discussion with my wife and it reminded me why even the insured, especially those with kids with special needs, need health care reform. What most people don't realize is that they are one issue away from being grossly underinsured and needing drastic help with healthcare costs. Here are a few examples we've heard over the past few years.

  • Child has developmental delays and requires weekly Physical Therapy, Occupational Therapy and Speech Therapy that show results. Therapy co-pays are $40 per session, so that is $120 per week or $5000-$6000 more annually, not including any doctors visits.
  • Child has a tracheostomy, but insurance company only covers 30 suction catheters a month or one a day. As an example of how grossly under covered this is, when our daughter has a cold, she might go through 15-20 in a day. This child's parents have to clean this sterile, disposable medical equipment multiple times a day.
  • Child has feeding issues and does not eat anything solid and only drinks a special formula that costs more than $20 a day. However, insurer does not cover the cost of the formula because the child is growing and not failing to thrive.

These are just a few examples of how insurance does not mean your covered. Please add your own examples in the comments.

Healthcare Industry group requests moratorium on Genetic Information Non-Discrimination Act

The Genetic Information Non-Discrimination Act (GINA) prohibits the improper use of genetic information in health insurance and employment.

Why do I have such a hard time believing people's motives are so good and in the best interests of the insured in this story via a tweet from 23andMe.

A healthcare industry group (The Care Continuum Alliance or DMAA)

and employer groups are urging for a moratorium on GINA fearing that the law's restrictions on "underwriting" activities will harm enrollment in wellness programs,