• Did you know that Cystic Fibrosis (CF) is an incurable and terminal disease that has the potential to directly or indirectly affect almost everyone in the U.S.?

• Did you know that one out of twenty five persons viewing this site is likely to have a CF gene mutation and not even be aware of it? Statistically this is a very prevalent problem and yet most people are not familiar with it or familiar with their potential to help.

• Did you know that Washington state has recently passed legislation requiring infant genetic testing for diseases like CF? But even this will not catch every case, and regardless, this screening will only increase the number of people knowingly dealing with their disease after birth and before it attacks their lungs, liver and pancreas, and other critical areas.

• Did you know that this fight has to be much more active? That's right, this is one disease that is can be beaten!! Research has already made gigantic strides including the 2010 testing on a new drug brought an actual correction on mutated genes, virtually correcting the broken cell functions!  It really is incredible and we want to maintain the momentum in this final push. Below I've provided below a few ways you can help and some linked resources and I would encourage you to get involved. Thank you

                                                    

                                      Emma Joy CF patient, & father Keith Jefferson CF gene carrier

Ways to get involved in the fight against Cystic Fibrosis

Get Informed - One of the initial ways you can get involved is to appreciate how prevalent this problem is as well as the herculean effort to address the problems surrounding the disease and finding a cure. The Cystic Fibrosis Foundation is truly the model organization on how to tackle a disease and surmount industry problems related to patients living with CF and they have a wide range of information resources. There is also significant activity in Europe that differs from U.S. research, a good place to start is CF Worldwde at www.cfww.org. And another foundation of smaller scale with informational resources is CF Research, Inc. (CFRI).

Sponsor a Team - Local team activities include the annual Washington Mutual Tower stairclimb, and the annual Great Strides walk. Former Seattle Seahawk kicker Josh Brown was an active supporter and sponsor of the Seattle Great Strides effort and you too can start your team by clicking on this link sponsoring a team. You can sponsor E-Team and help Emma and me meet our goals just by clicking on this E-Team link, no sponsorship is too small. Many companies now have charitable and philanthropic efforts they officially promote, and many have matching gift programs. Find out from your employer if they are matching donors and double your effort.

Form a Team - It is really easy to create your own team, both corporate and private teams can easily be started. There are many direct activities your team can participate in each year and all revenues are tax deductible for both organizations and individuals. Many companies now require annual activities of their employees and forming a Stairclimb or Great Strides team is an excellent way to accomplish this. Our first corporate co-team was Team ExOfficio and our first non-corporate co-team is Team Joy founded by friend and former athlete Maribeth Thomas.

Volunteer at an Event - There are several annual efforts that are conducted purely on the amazing efforts of thousands of volunteers. If you or your group or organization would like to help just contact the local chapter of the CF Foundation events coordinator Washington@cff.org.

Be an organ donor - Many CF patients have lungs so decimated by infection they won't make it past their twenties. This is the leading cause of death for adult CF patients. While lung transplantation is very difficult,  techniques, technology and success improves each year. If everyone were to become organ donors this would give a new lease on life for dozens of CF sufferers each year and save thousands more lives in general. There are many resources for this, registering when you renew your drivers license is the easiest, but here are just a few others: www.matchingdonors.com, www.donatelifenw.org, www.unos.org