To Lily’s friends and family members,
Anyone care to take a springtime stroll along San Francisco Bay , under the Golden Gate ? Last year was our first time participating in the Cystic Fibrosis Foundation’s “Great Strides” walk. Though it rained on us, it was a wonderfully warm experience.
Just to give you a little background…
As you know, Lily was diagnosed with Cystic Fibrosis a month after her birth. We had a rough and scary start, but have since been researching the disease and learning much more about CF and about Lily’s particular genotype (which is believed to be super-rare and on the mild side). Of course through all of this, we continue to enjoy Lily more than words can say.
Lily is receiving wonderful care in the Pediatric Pulomology department at Kaiser, Oakland (one of the country’s best). Every two months, she meets with Doctor Shay, nurse Cindy and the department’s team of dieticians, social workers, and respiratory therapists. She is still doing wonderfully; her pancreas continues to function fully (she is still “pancreatic sufficient”), she is now a hearty 25 pounds and her lungs are still super clear. She is overall a pretty happy (not to mention silly, smart, crazy-haired,sassy, and sweet) kiddo.
We do physical and breathing therapies with Lily every morning, lunch time and evening. First, we have her breathe through a nebulizer machine. The machine turns the drug, Albuterol, into a fine mist that helps thin any mucus that might accumulate in her lungs. Following this treatment, we “percuss” Lily’s main chestal lobes- this now involves using a vibrating vest to shake the mucus loose from her lungs (promoting “postural drainage”). It is when mucus accumulates and clings on to the walls of the lungs that infections start and problems arise. The vest took a while for Lily to get used to, but it is now a comfortable part of her daily routine, along with throwing balls around, climbing stairs, giggling, eating a lot and being read books. At this point, because Lily’s is so strong and healthy, her treatments are still all preventative measures.
Doctors, nurses and researchers have made incredible strides in learning about Cystic Fibrosis. If Lily was born just two years earlier, her disease would have gone undetected until there was a severe problem. Because of all of the medical dedication and funding, and because of all of the treatments that have been formulated, Lily may not show significant signs of the disease…ever. We are eternally grateful.
Unfortunately, the majority of kids affected with the disease are not as lucky as Lily. Some kids that are her age have already had lung transplants or are painfully waiting for donors. Others are not able to gain weight and have to take enzymes prior to any meal in order to retain the nutrients. An alarming number of patients don’t have sufficient health care coverage to help them obtain all of the drugs and equipment necessary to sustain their day to day activities. These are the people we need reach out to.
The Cystic Fibrosis Foundation (
www.cff.org) puts together annual “Great Strides” 10k walks and fundraising drives to show support for those with the disease and to work to find a cure. Because Cystic Fibrosis is such a rare disease (less than 30,00 people in the country are diagnosed with it), it is considered to be an “orphan disease.” This means that it receives no funding from the government. The Cystic Fibrosis Foundation is the sole source of funding for research, support and contributions to care centers, such as Kaiser.
It would mean a lot to us if you were able to join us this year. There are organized walks around the country. We have put together a local team (“Team Lily”) that will be marching on May 1st, starting at Crissy Field, in San Francisco . Following this letter are directions for how to join a walk and how to donate to the organization. If you do not live in the Bay Area, there are directions on how to join a walk in your region.
Thank you all for your incredible friendship and support.
With love, Lara, Brian and Lily
How to Join “Team Lily” and Great Strides in San Francisco on May 1:
1. Go to
www.cff.org2. Click on “Great Strides”
3. Click on “Register Now”
4. Enter in CALIFORNIA and then “Find a Walk” (ignore the “chapter” section)
5. Scroll down until you see “ San Francisco , Crissy Field, “ click on “Register”
6. Click on “I am an individual signing up as a member of a team.” Under “Select Team,” search for TEAM LILY (LARA COLLINS)
7. Create your profile. You will need to make a login and a password.
8. Under “Step 4- Complete Your Register,” you can set a fundraising goal (should you decide to fundraise). The default amount is $150 but if you scroll down (under the $150 amount) you can click on the blank amount and then type in an “other” amount, such as $25.
9. Sign the waiver.
10. If you are interested in making a donation under your registration, log in to your account at
www.cff.org. Where it says “Your Information,” click on “Make a Donation” and you can enter your credit card information there.
How to Join a Great Strides Walk outside of San Francisco
1. Go to
www.cff.org2. Click on “Great Strides”
3. Click on “Register to Walk Now”
4. Enter in your state and then “Find a Walk” (ignore the “chapter” section)
5. Click on “I am an individual walker who is not a member of a team.”
6. Create your profile. You will need to make a login and a password.
7. If you are interested in donating to the foundation, you can set a “fundraising goal.” Otherwise, you can leave that section blank.
If you are not able to join Great Strides, but are interested in making a donation to the Cystic Fibrosis Foundation under Lily’s name:
1. Go to
www.cff.org2. Click on “Great Strides” on the left of the screen
3. Click on “Make a Donation”
4. Under “Donate to a Walker ,” and type in Lily’s name (Lily Collins, California ) and click on “Find a Walker .”
5. Scroll down to search results and click on “Lily Collins” of “Team Lily”
6. On Lily’s page, click “Click to Donate.”
If you’d like to make a donation, without using the internet:
1. Write a check to the Cystic Fibrosis Foundation
2. Under the memo section, you can write “For Team Lily-SF Chapter”
3. Send check to the Collins’ ( 872 Erie Street , Oakland , CA. 94610) and we will turn the check in to the foundation.
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