Run For Lilly

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Lilly — Thu, 15 Nov 2012 15:59:17 +0000

THank you all for your support for ‘Run For Lilly’ and the Clark Family! The 2012 Run was a success! If you have any follow up questions please contact info(a)runforlilly.com

A Message from the Clark Family!

Lilly — Mon, 30 Jul 2012 19:18:42 +0000

We learned so so much on our trip to Camp Sunshine. Here is a quick update as promised: There are only 1000 cases of ped low grade brain tumors a year. After meeting with 40 other families, we realized that Lilly’s journey will be tough, but hopefully a long one. Radiation should never be used unless it is the last hope. Radiation causes more tumors to grow in the brain later down the road. We are in the process of finding a Neuro opth., turns out that the eye doctor we have been going to is only a Ped Opth. If the optic nerve is damaged than we will not be able to tell anything about vision or signs of hydrocephalus from just looking at the eye. We also found out that there are different magnifications for MRI machines. We need to find the most powerful one to view the tumor, since even a little growth can be devastating, because the tumor is wrapped around her memory bands. Finding those MRI machines in Greenville may not happen. The battle with fatigue needs to be addressed with the oncologist. Dr. Peter Manley, from Dana Faber in Boston and Harvard, will be passing Lilly’s scans around to his colleagues for more insight. He will be in touch with our team of doctors here soon. We met with a researcher who has spent the last 4 years trying to break the blood-brain barrior that this type of cancer cell, an astrotoma, forms to take over the brain and block chemo from working. He developed a drug called Gleevac. If Lilly has a type of mutation called the BRAFF gene, then she may benefit from this drug. The drug has not been released to many patients because we do not know the after effects. We are going to take Lilly for genetic testing to see if she is a match. Most importantly, we realized just how lucky we are to have a surgeon who is careful and patient and by his own words said, “I will not be a cowboy and hurt your daughter”. The LORD is watching over Lilly and we are all so thankful for everyone’s support! Thank you so much! With love, The Clark Family Please feel free to post any comment or ideas that you might have. We are looking for families in the area who are in the same position. Knowledge is Power and we want to help anyone we can:)

How You Can Help

Lilly — Mon, 02 Jul 2012 10:00:27 +0000

Can you help with a financial donation?
It’s going to be an ongoing battle for Lilly and her family with medical issues and financial burdens for a long time to come. The medical issues we can’t always help with, but financially, we can all make a small contribution to help have a big impact on their lives.
To donate, please click on the ‘Donate’ button above.

Can you make it to the race?
Even if you’re not running, showing up in support will go a long way to helping Lilly and the Clark family keep their heads high and know that we are all rooting for her.
If you want to take that extra step and join the 5k Run or sign up as a volunteer, you can do so here with Go Green Events.

Or you can Send Lilly a message of support! You can always reach out to Lilly and her Family from our Contact Page.

About Lilly

Lilly — Mon, 02 Jul 2012 08:00:51 +0000

As a bright and active 2-year-old, Lilly began complaining that her head hurt over the course of a couple of weeks. Her parents took Lilly to her pediatrician and a specialist before she was finally admitted to an area hospital for tests. The results indicated there was a mass in her brain. Lilly was immediately referred to the hospital, where further tests provided shocking news: Lilly had a tumor in her brain, called Juvenile Pilocytic Astrocytoma. So began a medical odyssey that continues to this day. Shortly after being admitted, neurosurgeons removed most of the tumors within her brain. A week and a half after her surgery, Lilly was able to leave the hospital. Lilly was doing very well coming out of surgery without major complications. Because of the surgery and the delicate location of the tumor, Lilly suffers from various side effects, such as frequent headaches, seizures, and vision problems.

Run For Lilly

Lilly — Mon, 02 Jul 2012 07:00:05 +0000

Saturday, October 13th, 2012 @ 8:30AM

Acadia Community Pavilion

Founders Circle

Piedmont, SC 29673

Come join us in Acadia, www.AcadiaSC.com, for a special fundraising 5K Run for Lilly on October 13, 2012. All contributions are tax-deductible, and all proceeds go to support Lilly Clark in her battle with brain cancer. Run for Lilly covers a 5K route over paved roads and off-road trails along the Saluda River, through a wildlife preserve and around the beautiful Acadia community in Piedmont, South Carolina, located just 10 minutes from downtown Greenville. We chose to run in Acadia for its breathtaking balance between community and nature. Lilly is a special little girl, so we wanted her family and friends to enjoy a special place for our fun-run for Lilly’s benefit. The race is for all ages, and begins at 8:30am on Saturday, October 13, 2012, rain or shine. Whether you run or watch, be sure to stay after the race for our awards and celebration at the Acadia Pavilion. Acadia is the first new-urban master-planned community in the Upstate of South Carolina. Acadia is appreciated for its natural beauty and wealth of amenities. Everything you could want in an active outdoor lifestyle neighborhood is already in place. It is no surprise that Acadian homeowners prefer to stay and play in Acadia. Acadians enjoy the Pavilion for concerts & BBQs, the PoolHouse for concessions, aerobics, yoga, zumba, fencing & weight training, the swimming pools & fountains for all ages, the RiverHouse for parties & receptions, the TennisHut and courts, the miles of hiking & biking trails, the community vegetable & flower gardens, plus many more amenities available in Acadia. Be sure to visit Acadia online at www.AcadiaSC.com, or via smart-phone at www.AcadiaSC.mobi. Better yet, schedule your own personal tour of Acadia by calling 864.269.1011 or email: sales@acadiasc.com. This event, Run for Lilly, is underwritten by the Acadia Community Foundation, an IRC 501(c)(3) tax-exempt charitable organization. Your donations for Lilly should be made as follows, and you will receive an acknowledgement letter to support for your tax filings. Please make your contribution by check or other payment to:

payable to: “Acadia Community Foundation”

for: “Run 4 Lilly”

Acadia Community Foundation, P.O. Box 8580, Greenville, SC 29604

Email us: Run4Lilly@AcadiaSC.com

Call us: 864.269.1430 (ask for Gail Fortner or Caleb Freeman)

The starting point of the 5k Run for Lilly, and the location of the post run awards ceremony

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