Parkinson's folks are among the toughest fighters in the patient advocacy field. I don't know why this is. Maybe it is because Parkinson's is progressive; things get worse.
All I know is, when I need help on an advocacy effort, I turn to the Parkinson's community. They are not afraid to speak up, and their efforts pay dividends for everyone. When Parkinson's groups stake out an issue, other organizations pay attention. And when the groups come together, astonishing things can happen. I will give you a multi-million dollar example in a minute.
But first, 2012. Every patient advocate must take a political stand this year.
"Ugh, politics!" people say, "I don't want to get involved in politics!"
To which the answer is, of course, "Too late." Everyone is involved in politics; it is all around us, like water to fish.
Being "nonpolitical" just means you are taking the side of the strong, accepting things the way they are, keeping your head down: like a fish which does not think about the hook.
If you or someone you love has Parkinson's or another chronic disease, look carefully at the two parties, and their candidates, and know what they stand for.
Obviously, there are exceptions on both sides. For instance, Republican Connie Mack in Florida, like his highly respected father, is a strong stem cell research supporter. Fortunately, Democratic rival Bill Nelson is also in favor of stem cell research. So Floridians have two good Senatorial candidates to choose from!
But for the most part, Republicans are anti-government services, (which people with medical problems desperately need) and also against funding stem cell research.
Democrats favor both of the above.
President Obama supports (and funds) embryonic stem cell research. Candidate Romney has stated that he will not. That matters for American families with a chronically ill child or adult. So, what is your patient advocate group doing about it?
At very least, they should strongly recommend that every member register and vote. Also, they can (and should!) offer help in the increasingly complicated registration process. They can organize carpools, help their members get to the polls.
It is also both legal and appropriate for patient advocate groups to share information. It can be pointed out, for instance, that in 2008 the Republican presidential platform called for a ban on all embryonic stem cell research, public and private.
Do not ever give up your rights as a citizen. As an individual you can always write letters of support for candidates, and mention your involvement as a patient advocate.
"As a patient advocate for Parkinson's disease, and speaking as an individual, I strongly support Senator X's stance on funding embryonic stem cell research."
Then put your name, title (if any), and organization -- and include the words: "Title listed for information only."
Does it matter?
In 2004, patient advocates from all across the nation, including Parkinson's folks, fought for (and California voters approved) Proposition 71, the Stem Cells for Research and Cures Act.
Today, as a direct result, Parkinson's disease is almost twenty-nine million dollars ($28,884,577) closer to cure.
That is the amount of research grants the California stem cell program gave to scientists fighting Parkinson's disease -- so far.
Below are the actual grants targeting Parkinson's disease.
Without a political struggle, not one of these would have been funded.
NOTE: The California stem cell program has no connection with my political opinions.
This is public access material taken from the web site of the California stem cell program, the California Institute for Regenerative Medicine or CIRM. Go to www.cirm.ca.gov -- click on disease grants, then go to your "favorite" disease to see how much has been spent there.
- Evan Snyder, Sanford-Burnham, developmental candidates for cell-based therapies for Parkinson's disease -- $3,562,824
- Xiamin Zeng, Buck Institute for Age Research, develop a cell replacement therapy for Parkinson's disease using hESCs -- $55,000
- Xiamin Zeng, Buck Institute for Age Research, banking transplant-ready dopaminergic neurons using a scalable process -- $6,016,624
- Fred Gage, Salk Institute, cross-talk: inflammation in Parkinson's Disease in a humanized in vitro model -- $2,336,404
- Zhuohua Zhang, Sanford Burnham, derivation of Parkinson's Disease coded-stem cells (PD-SCs) -- $1,589,760
- Zhuohua Zhang, Sanford Burnham, modeling Parkinson's Disease using HESCs -- $758,999
- David Schaffer, UC Berkeley, directed evolution of novel AAV variants for enhanced gene targeting in pluripotent human stem cells and investigation of dopaminergic neuron differentiation -- $918,000
- David Schaffer, UC Berkeley, engineering defined and scaleable systems for dopaminergic neuron differentiation of hPSCs -- $1,493,928
- J. William Langston, The Parkinson's Institute, editing of Parkinson's disease mutation in patient-derived iPSCs by zinc finger nucleases -- $1,327,983
- J. William Langston, The Parkinson's Institute, using patient-specific iPSC derived dopaminergic neurons to overcome a major bottleneck in Parkinson's disease research and drug discovery -- $3,701,766
- Lei Wang, Salk Institute, genetic encoding novel amino acids in ESCs for molecular understanding of differentiation to dopamine neurons -- $2,626,937
- Stuart Lipton, Sanford Burnham, hESC-derived NPCs programmed with MEF2C for cell transplantation in Parkinson's Disease -- $96,448
- Su Guo, UCSF, identifying small molecules that stimulate the differentiation of hESCs into dopamine-producing neurons -- $564,309
- R. Jeremy Nichols, the Parkinson's Institute, understanding the role of LRRK2 in iPSC models of Parkinson's Disease -- $1,482,822
- Marcel Daadi, Sanford-Burnham, neural stem cell-based therapy for Parkinson's disease -- $99,976
- Susan McConnell, Stanford, optimization of guidance response in hESC-derived midbrain dopaminergic neurons in development and disease--633,170
- Michele Calos, Stanford, site-specific integration of Lmxla, FoxA2, & Otx2 to optimize dopaminergic differentiation --1,619,627
TOTAL: $28,884,577 -- almost $29 million being spent on the pathway to cure for Parkinson's.
This would never have happened without the patient advocacy community.
If we had said, "Ugh, politics!" about Prop 71, that $29 million would not be in research today.
Do not sit idly by in the next 100 days. Help your friends register and vote. Support candidates who support research, and programs to care for our loved ones who are suffering right now.
Silence is not always golden.
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