Dear friends,

   I write to you today on an issue that will have tremendous impact on the present and future of all our efforts to treat and cure FA. Some of you have probably taken some note of the fact that the U.S. Congress and the U.S. Administration finally came to agreement just before January 1st that the country should not be allowed to go over the "fiscal cliff" on that day. Unfortunately, though, that agreement did not contain solutions to the fiscal crisis but merely postponed the date by which such solutions must be agreed if we are to avoid what is called sequestration.

   In a nutshell, sequestration would result in slashing indiscriminately the budgets of every federal agency across the board with no consideration of priorities or the disastrous impact on particular agencies or on the Americans served by those agencies. Of course, for FA families and for all Americans facing serious health conditions with unmet medical needs, the two federal agencies of deepest concern are the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Estimates of sequestration's across-the-board cuts range between 5 and 8 percent. Reliable sources estimate that the NIH would lose on the order of $2.4 billion while the FDA would lose $200 million to $220 million this year alone (between March 1 and October 1).

   None of us is satisfied with the current speed of treatment discovery, development and approvals. Cuts to the NIH and FDA budgets, especially of the magnitude scheduled via sequestration, would have immediate and long-lasting impact on that entire process, slowing it considerably. There may well be Federal Agencies that should be trimmed substantially but sequestration is scheduled to lop off the good with the bad. This indiscriminate, irresponsible approach to reducing the Federal budget could be likened to a decision to reduce a person's weight by cutting out their heart and taking off a leg rather than doing the hard work of diet and exercise.

   The NIH devotes about $31 billion annually to medical research for the American people which generates more than twice that amount in new economic activity and supports more than 430,000 jobs. Among these jobs are those of the "seed corn" -- young scientists who are growing in the medical field and taking the reins of discovering and developing the treatments needed by millions of Americans. But, with the NIH budget having been reduced by about 20 percent in real terms over the last decade, thousands of diseases remain without any treatment and tens of millions of Americans are losing their lives and the quality of their lives waiting for such treatments to be discovered and approved. FDA-regulated industries account for nearly 25% of U.S. consumer spending. The bio-science industry, whose products depend on FDA regulation, directly employs about 1.5 million Americans and generates another 18 million related jobs. If the FDA budget is sequestered, America's food will be less safe and Americans may die; development and approval of new therapies will be slower; problems with vital imports will be more numerous, and implementation of three new laws involving medical treatment development and food safety will be slowed.

   So, I would like to ask you to email your two U.S. senators and your U.S. representative today or tomorrow and tell them how important it is to you and your family that the NIH and FDA budgets not be sequestered. I often tell members of congress and staff that strong NIH and FDA budgets can save the lives of our kids while weak NIH and FDA budgets would threaten them. Your senate and house representatives will listen to you and your appeal for the lives of your family. Please email your senators and representatives right away with this vital appeal. Congressional hearings on this issue are being conducted Thursday (February 14) and, unless the Congress acts responsibly over the next two weeks, sequestration will take place on March 1. You can use the attached template letter and please take a look at the attached congressional lists to see if your representatives serve in key leadership or committee positions to which you can refer in your email messages.

   As soon as I send this to you, I will email my two senators and representative with my own letter. You can identify your senators and representative and email them by following the directions below. Please do so right away. If we allow sequestration to cut the NIH and FDA budgets, medical research and development will not get these vital resources back and will not recover in time to help our FA families.

Warm regards,

Ron Bartek - FARA President