 |
 |
I have mixed feelings on the Samuelson [PAN] / Fox union. Joan Samuelson has done a good job with her lobbying efforts. She led the fight for the Udall legislation from the very beginning to its passage and implementation. She was criticized and lambasted by the two largest national PD organizations in the early part of her campaign for increased federal funding. She tried to work within the Parkinson's disease community as it existed in the early and middle 1990's, but the entrenched PD organizations considered her to be at best a misinformed dreamer and a self-serving opportunist. They changed their tune as she gained momentum, and they joined her to the extent that they tried to claim some or all of her victory for themselves. In the late stages of her drive for the Udall Act, there was real but sometimes begrudging help from the two largest national PD organizations. The Parkinson's Action Network [PAN] has been a lobbying organization which stated that it had no desire or intent to compete with the national PD groups. I gave support to Joan and PAN with the understanding that PAN was not and would not be a competitor to the regular PD organizations. The statement about union with Fox puts PAN [now Michael J. Fox Foundation for Parkinson's Research] and its aims puts it squarely in competition with the national organizations. The Parkinson's community at the local levels has been battling to speak with one voice. The UPF / PDF merger was a step in the right direction. Now we are back to four again. Will