Saturday, June 29, 2013

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.

Saturday, June 8, 2013

**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!

Thursday, June 6, 2013

Love is all you Need!

First, a sweet video of Ella and Claire dancing while Mommy sings "I Know You":


And then...thank you for all the love and support you have shown.

Saturday, June 1, 2013

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="">

video

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!