4 Seasons Parkway Run & Walk for CHOP!

Ella is a 7 year old girl on FIRE!!!! She is currently fighting brain tumors caused by NF1 with all that she has!!! She was diagnosed when she was 5 years old and has been closely monitored ever since for side effects such as behavioral issues, poor coordination, low muscle tone, vision loss, tumors and so much more. She embraces her treatment and faces every challenge with a positive attitude. Ella is just over half way through her year long regimen. She is bubbly and her generous spirit is contagious. Although Ella has many day to day struggles it doesn't stop her from doing the most good... She loves helping people!!!

Ella donating $10,000 to CHOP NF research in June!

Hope for Ella is looking for team members to join us in Walking a 2K at the Four Seasons Parkway Run & Walk benefiting CHOP. If you are interested in joining our team or making a contribution to support our team please click the link below to sign up!!! It is gonna be a great day!!!

Join Team HopeforElla

Remember to "like" HopeforElla on Facebook , follow along on Twitter ( @HopeforElla ), and/or subscribe here on the blog to stay updated on the MANY upcoming events!

NF1 Research News (Winter 2013)

I (Aunt L) just read an interesting article called Cracking the Code of NF1 , about research being performed by Dr. Nancy Ratner at Cincinnati Children's. The research is remarkable and promising--and yet, still so many unknowns! What struck me with this article is this is the first article I have read on a professional web page that expresses the frustration of all that remains to be understood about NF1 and what works and what doesn't work.

This particular research is studying a cancer drug that seems able to disrupt the molecular process of NF1 called MEK, showing the reduction of 80% of plexiform tumors in tested mice. Dr. Ratner believes that the reason the drug worked is that it comes the closest to the specific molecular defect of NF1. To try to put this in easier terms: the free running tumor creating process that goes on in patients with NF1 would be the bulls eye of a target. The most recent promising tumor treatments have come as close as 5 rings away from the bulls eye (but also at times misses completely), while this specific drug appears to get as close as 1 ring away from the center.

Risks involved with this new potential treatment are, as with so much of NF1, not clear. Neurofibromas are "tough", they are quite fibrous which is why chemo-therapies are often prescribed for such long periods of time (Ella's is 16 months). The longer the treatment the higher the risk, which leaves many doctors reluctant to advise strong and/or experimental therapies with NF1 patients. Dr. Ratner is hoping to have clinical trials with NF1 patients to be opening soon. Her entire career has been devoted to NF1 research and her goal is a cure, which is refreshing compared to so many articles about research that are purely symptomatic treatment centered. While she continues to focus on a cure, Dr. Ratner believes this treatment shows great promise and is another step towards a cure.

**New pricing on Hope for Ella items**

Due to higher postal prices, we greatly underestimated the cost to ship items. Please note the new pricing for shipping in the US and Internationally.

T-Shirts are now $15 not shipped, $20 if shipped to US residences, and $28 if internationally shipped.

Bracelet pricing is $2 not shipped, $5 shipped within the US, and $28 shipped internationally.

Hope for Ella ribbon pins are $1 not shipped, $2 within the US,  and $5 internationally shipped.

Hope for Ella window decals are $5, $8, and $12. 

Pictures and PayPal order links for the ribbons and decals will be coming soon!

As always, you may also order by sending your orders to:

Hope for Ella

PO Box 71

Williamstown, NJ 08094

Thank you!

Hope for Ella reached THREE THOUSAND LIKES!!

And I am happy to say the number keeps rising: the "likes" at this moment are 3,131. Can you believe it? Ella's fans are amazing and truly pulled out all the stops to share and persuade their facebook friends and family to go like Ella's page. I don't think we could have wrapped up Neurofibromatosis month any better than this. Here are Terri's words after logging onto the page yesterday, first in the morning (Thursday ended with just under 3000 likes on the page):

HOLY COW!!!! I just screamed out loud!!! Thank goodness Ella is at school. I want it to be a surprise!!!only 69 more to go!!! AMAZING!!!! What wonderful supporters Ella has!!! With you all in our corner how could we lose? YIPEE! Now i will have a smile on my face all day!!! Can't wait to see where we are this afternoon!!! Have an AWESOME DAY!!!

And then again in the early evening: 

I cannot believe it!!!!!!!!!!!!!!! I thought for sure when I got on here this evening that we might be almost at 3000 but WOW!!!! we are 100 over!!!! How stinking amazing!!! You all ROCK!!!! She is at dance right now and I can't wait to surprise her with the news!!!! Keep an eye out... this should be good!!! THANK YOU!!!!

Allow me to now show you what I know you've been waiting for....Ella's reaction!! (filmed and narrated by Mommy Terri <3 font="">

As always, THANK YOU for sharing however you are able, whether by HopeforElla on Facebook,

by the Hope for Ella Blog , by Tweeting #HopeforElla and/or following HopeforElla on Twitter, and any other creative ways you have shared--YOU are all helping change the future of those with Neurofibromatosis. Each one of you represents one more person that has heard the word neurofibromatosis. Through all of you and with Hope for Ella we will see changes in research of this genetic disorder!!

We are Hope for Ella

Mighty Hope for Ella,

We're Fighting for a Cure

'Til NF's NO MORE!

                     

                                            

"What is Neurofibromatosis?", a video

**Here is an updated form of the video, in its original form rather than the YouTube version.** A brief video explaining the very basics of this extremely complicated, volatile, and variable disorder, along with how you can help share and raise awareness! The song playing is "Bring on the Rain" by JoDee Messina w/Tim McGraw, available on iTunes. www.facebook.com/HopeforElla Twitter @HopeforElla or use #HopeforElla

Hope for Ella CHALLENGE!!!

Ella's second 10 week cycle of chemotherapy begins next Thursday. Let's get her Facebook page HopeforElla  hopping up (and maybe even over???) to 2000 likes by then; she gets so happy and excited to see all of the support. It isn't going to be easy for Ella OR for Terri and Chris to get going back into treatments, we can at the very least help raise their spirits by showing our support.

If you already have liked the FB page, you can start adding your messages of hope and love on Wednesday, March 6th--but until then, please...SHARE THE PAGE! Remind people to like the page, not just the picture or status that you have shared.

Remember you can tweet #HopeforElla and share her FB page that way too, and or (even better lol) follow @HopeforElla on twitter and keep retweeting her posts there.

No facebook? No problem, you can still participate by commenting here on the blog with your messages for Ella and her family. You can post those comments anytime, but if you wait until Wednesday it will be easier to keep track because I will post a new entry that day, specifically for Terrific Treatment Thursday.

ELLA'S FIRST BIG EVENT! MAY 18TH, 2013

MAKE NF DIsappear...Laughing for a Cure!

In honor of NF awareness month, join us for a fantastic evening of food, beer/wine, music and outstanding entertainment by non-other-than Ella herself and Disney's Boardwalk performer, comedic magician, Brian Staron!

http://www.brianstaron.com/

What a fantastic line-up for a great cause!!! Help Ella on her mission to cure NF, spread awareness, and help others along the way. Must be 21. 

** Cash Bar ** Basket Raffle ** 

Tickets are $35 per person

and can be purchased here! (top right of this page)
When ordering, please indicate who is in your party
so we can seat you together!

Tickets will be reserved upon payment and 

will be held as "Will Call" at the event.
If you can't make it to the event, but would like to donate, 
Please use the "To Donate" button on the right.

Thank you!!!

WHERE: Masso's Columbus Mannor 1351 N Black Horse Pike, Williamstown, NJ

                   

                   Masso's Catering Website

WHEN:  Saturday, May 18th, 2013, 6pm-11pm

Questions? Comment below, or email hopeforella@gmail.com 


May 4, 2013 quick update

Here are 2 paypal screen pix of a purchase, to try and help anyone having a hard time buying tickets.

This is the "landing page" after you click to purchase tickets. Here, you will enter how many tickets you want to buy (quantity), then choose either "check out" or "check out with PayPal". NOTE: you do NOT need to have a paypal account. When you get to the next page, of which I did not upload the screenshot, sorry, you will see "don't have a paypal account" link or button you can choose that one.

Here is the "pay now" page. See just under the blacked out shipping address, it says "add special instruction to the seller"? You will click the word "Add", that is where you would type to tell us who you'd like to be seated with, or any other instructions/messages you want to send. Hope this helps!! ♥

Mommy Terri's Words

Every Tuesday, we'll have at least one blog post that is in Terri's words. Here is today's:

In May of 2011 our world was forever changed when our seemingly perfect five year old daughter, Ella, was diagnosed with Neurofibromatosis (NF). At first we could hardly pronounce it let alone understand what that one word would mean to our lives. Researching NF frightened us to our core. Words like vision loss, scoliosis, disfigurement, hearing loss, development delays, behavioral problems, tumors and cancer were all associated with that one diagnosis. And to top it off there is no treatment! No way for us to stop NF from taking its course with our precious baby. What challenges would it present for Ella? Would she have pain? What quality of life could we expect? These and a thousand other questions surround us daily.  We live each day to the fullest but always have in the back of our minds… what’s next?

It started with the diagnosis, then a myriad of appointments and tests, then learning about the growths in her brain, followed by a diagnosis of ADHD, vision loss and more. After about a year of close monitoring through MRI’s we received the news that no parent wants to hear… We have to start chemotherapy. The tumors were growing and we needed to take action. Through all the headaches, needle sticks, sedation, tests and challenges, Ella has remained positive. She wakes up everyday ready to take on the world. Ella helps the homeless after every Terrific Treatment Thursday. She plans to hold a community involvement event to make headbands and hats for those losing their hair. She wants to raise money for research to cure Neurofibromatosis. She wants to, in her own words, “change the world”. Ella is brave, strong and a true inspiration. She is a constant reminder of the meaning of the words generosity and hope. It is for that reason that we are faced with a new challenge making her foundation a success. In addition to all that Ella wants to do… this also makes us want to reach out to other families challenged by NF and create a place of community, awareness and information so that no other parent feels alone when they hear “We’re sorry… there’s nothing you can do”. 

The Havoc of Neurofibromatosis

Neurofibromatosis has seemingly limitless effects neurofibromatosis on the body. As vast as the possible effects, shown on the diagram, may seem they are only some of what may happen. This disorder moves in stealth mode and can appear ANYWHERE in the body, at any time, in many forms. More research is not only needed, it is NECESSARY. Doctors can only treat the symptoms and effects of neurofibromatosis, they can not treat the disorder itself. Hope for Ella will do everything we can to push research towards specific treatment and, hopefully, a cure. 

Remember, you can also get more information on Facebook by clicking ---> HopeforElla

and please like the page! You can join the blog via the link on the right side of the page, sign up for blog updates by email (also on the right side of the page), and/or send an email to hopeforella@gmail.com for information on t-shirt purchases or donations.