To Lily’s friends and family,
Another year has passed and the spring is upon us (though it barely seems that the Bay Area experienced a winter this year). Once again, we will be participating in the Cystic Fibrosis Foundation’s “Great Stride’s” walk. This year will be our fifth year attending and fundraising for this worthy cause, one that all of you may know is so very close to our hearts with Lily. We want to thank all of those who joined with us, walked with us, and made contributions to the Cystic Fibrosis Foundation last year – it has meant so much to us and we continue to be thankful for all of our wonderful support and friendships.
For those who may be new to this (and for those who may want a refresher on CF) please read on…
As you know, Lily was diagnosed with Cystic Fibrosis (CF) a month after her birth. We had a rough and scary start, but have since learned a considerable amount about the disease and about how Lily is expected to respond given her particular genotype. As it turns out, Lily’s genotype is extremely rare and typically expresses itself with milder than average symptoms. So far, this has proven true and Lily is doing wonderfully.
Lily is receiving world-class care in the Pediatric Pulmonology department at Kaiser,
We continue to do physical and breathing therapies with Lily every morning and evening. This first begins with breathing treatments using a nebulizer machine. The machine turns the drugs, Albuterol and Pulmozyme (manufactured by a “local” company, Genentech, with offices here in the Bay Area) 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 having a blast at Dandelion Nursery school (Lara’s alma mater), singing, practicing her letters, riding her bicycle (with training wheels, several stuffed animals tucked into her bicycle pouch, two bells and sparkly streamers hanging from the handle bars), drawing, “reading,” dancing, building rocket ships with her grandparents, and rock climbing with Brian! We are waiting patiently to find out what school Lily will be attending in the Berkeley Unified School District as she will be starting Kindergarten next Fall! At this point, because Lily is so strong and healthy, her treatments are still all preventative measures, and we are eternally grateful.
Unfortunately, the majority of kids affected with the disease are not as lucky as Lily. Most have already needed to be hospitalized for lung infections and 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 every 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.
Doctors, nurses and researchers have made incredible strides in learning about Cystic Fibrosis. Exciting progress continues and just last year, the FDA approved a groundbreaking new drug, Kalydeco. Though this particular drug is only suitable for patients with a specific genotype, it actually targets the genetic mutation (correcting the underlying cause) whereas existing drug therapies up until this point have simply eased the symptoms. If the actual mechanisms can be corrected for one mutation, it is only a matter of time before we are able to correct more common mutations.
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 30,000 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. It is a truly inspiring event. There are organized walks around the country. We have put together a local team (“Team Lily”) that will be marching on Saturday, May 4th , 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 4th :
1. Go to www.cff.org
2. Click on “Great Strides”
3. Click on “Register Now”
4. Enter in
5. Scroll down until you see “
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). Important: the default amount is $150 but if you scroll down, under the $150 amount, you can click on the blank amount. You can either leave it blank or you can type in any other amount, for a one-time donation.
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
1. Go to www.cff.org
2. 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.org
2. Click on “Great Strides” on the left of the screen
3. Click on “Make a Donation”
4. Under “Donate to a
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”
Send check to the Collins’ (
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