Our Magical Medicine Monday is coming up and for all of our new followers that is Ella's chemo day. A day that is both challenging and a joy at the same time! We ask our fans to send messages of encouragement, well wishes, jokes, photos of you showing your support (Ella's favorite color is pink), etc. It helps her get thru the day with love and positivity!!! She has been getting more interested in random acts of kindness... anyone have any suggestions? Please get ready for Monday... it's Tumor Stomping Time!!!
Remember if you use Facebook, you can "like" us at www.facebook.com/HopeforElla
Showing posts with label brain tumors. Show all posts
Showing posts with label brain tumors. Show all posts
Friday, August 9, 2013
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.
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.
Thursday, May 30, 2013
Ella's Cooking Show!
Mama Terri has been hard at work revamping the family's eating style. While her initial motivation was to incorporate as much tumor stomping super foods as possible, it has since become an overall change towards healthy lifestyle living for everyone. (personally, I think she has always been a healthy food cooking/serving pro, and not just cause I'm her partial Aunt lol).
It was an adjustment for the girls and especially for Ella. While she is obviously still very young at 7, she is old enough to NOT LIKE THAT stuff! Terri didn't cave and has just kept on with changing their diet, and I think this little video shows it is rubbing off on Ella! She's interested in the way Terri is now preparing foods and decided she wanted to have a cooking show!
Enjoy!
It was an adjustment for the girls and especially for Ella. While she is obviously still very young at 7, she is old enough to NOT LIKE THAT stuff! Terri didn't cave and has just kept on with changing their diet, and I think this little video shows it is rubbing off on Ella! She's interested in the way Terri is now preparing foods and decided she wanted to have a cooking show!
Enjoy!
Tuesday, March 19, 2013
"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
Thursday, February 28, 2013
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.
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.
Wednesday, February 27, 2013
ELLA'S FIRST BIG EVENT! MAY 18TH, 2013
MAKE NF DIsappear...Laughing for a Cure!
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.
When ordering, please indicate who is in your party
so we can seat you together!
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
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.
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!! ♥ |
Tuesday, February 26, 2013
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”. 
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”. Monday, February 25, 2013
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.
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