Monday, September 16, 2013

Surprise--a brand new i-Pad!!

From Terri:
HOW AWESOME!!!! These ladies are angels!!! Linda collected money from her co-workers and presented Ella with an IPad with all the accessories!!! and Jody gave Ella many little stuffed dogs!!! She LOVES them!!! Thank you to all that pitched in to make Ella's day, week, month, etc!!! We are forever grateful!!!

 Here is Ella with Jody <=====

and Ella with Linda
     ======>












And, a little video of Ella receiving her surprise!

video

Friday, August 9, 2013

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!!!





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!



Magical Medicine Monday this Monday!

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

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!







                     
                                            


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!



Thursday, May 23, 2013

New Hope for Ella T-Shirts are here!!


Here are the new T-Shirts!  The colors are striking against the dark grey background!!

The little details on the crown are fantastic-notice the "E" at the top with butterflies as jewels :)

Sarah-Grace & Emily are show their
HopeforElla Power!

Ella and Claire are cutie-pies posing in their shirts!


ORDER HERE, OR USING THE RIGHT SIDEBAR LINK 

Shipped or Not Shipped Prices


Please state size/amounts





Tuesday, May 7, 2013

Hope for Ella Rubber Bracelets!!

Buy your Hope for Ella Rubber Bracelets and raise awareness of NF and spread the word about Hope for Ella all the time, easily! Remember, when people ask you what is Hope for Ella, you can tell them to search for this blog on Google, or tell them HopeforElla is on Facebook!




Each bracelet is hot pink with bright green lettering, and is $2.00/bracelet, $2.50/bracelet if shipped. Thank you!!
Enjoy wearing your bracelets, we hope you smile each time you look at them as we do :)

Order by sending a check with a note for how many you'd like to
Hope for Ella
PO Box 71
Williamstown, NJ 08094

OR, by choosing your options from the drop-down menu & clicking the button below! :)



Bracelet pricing




THANK YOU!!!!! WE LOVE OUR FANS!!!!

Saturday, April 20, 2013

Princess Ella's Surprises at Disney!

The whole family had an amazing, lifetime-lasting-memory-making trip to Disney World! Terri's description:

I knew when I reached out to Brian Staron to preform at our May event that he was VERY funny and talented! I also knew that he was special to us and a part our magical Disney memories. I further knew he was generous and kind for offering his services for our event and traveling all the way up to New Jersey from Florida. But what I didn't know was how extremely amazing and out of this world he is!!!

I contacted him to find out when he would be preforming during our stay so we could attend a show. We planned to attend one and never in our wildest dreams could we have imagined what he had planned for us. If we would have just seen his show that would have been amazing and we would have been content. But no... Brian had about 15-20 Disney cast members out to watch the show and greet Ella. They presented her with enough balloons to be in the movie UP, a framed photo of her and Brian at their first meeting in 2010 and princess ears for Ella and Claire. Brian introduced us to the crowd as a special family to him and gave Ella a gong to bang whenever he said FUN... I'm sure you can guess it was said a lot!!! If it would have ended there that would have been plenty and we would have walked away with such warm fuzzies and special memories. But no... After his show they all walked us down to ESPN Zone (We had an entourage!). We were sat at a table and then on the jumbo tron Brian announces that we were MVP's and that our dinner was on Mickey. We had a great dinner and then they brought out a special cake. Brian told us this wasn't the end of the surprises. Lisa (his manager) told us to be at the fire station the following day. On our way there Ella said "My BFF Brian said there would be more surprises... but it's ok if there aren't any, last night was enough". Then we go to the fire station and are whisked away to City Hall and taken into a back VIP room where we were greeted by 5 beautiful princesses!!! Claire immediately fell into Belle and would not let her go. Ella screamed in delight and sang a medley with each princess using each of their songs. She couldn't stop giggling!!! The princesses were so gracious and sweet. Claire later on the ride home said "my wish came true" and I asked her what was that and she said "Belle" I knew exactly what she meant!!! And if that was all it would have been more than enough and we would never ever be able to express our gratitude for all that he has done to make this visit extra special. Then we returned to our room and there was a photo album with the photos of the night before and trinkets fro the girls. WOW... Speechless...Priceless...Unforgettable...Thank You
Here are some fantastic pictures from the night of the surprise!

 

They will carry these memories in their hearts forever. Brian Staron is not only a talented Disney caliber entertainer http://www.brianstaron.com/ but also a generous and kind human being. Take advantage of a unique opportunity to see him live and in person, here in NJ on May 18 at Make NF Disappear...Laughing For A Cure!  (click on the title for info)!!



Wednesday, April 17, 2013

Ella is part of Disney Friends for Change!!!!

Our special little hero was selected to receive a grant from Disney Friends for Change YSA (Youth Service America, Youth Changing the World) to help change the world! There are a limited number of grants awarded each year, and Disney has recognized the amazingly giving spirit in this child. Details are below. If you think you'd like to attend (April 28th, in Williamstown, NJ), please send an email to hopeforella@gmail.com as the building where the event is being held is close to reaching max capacity!! If you are on Facebook, you can visit the event page https://www.facebook.com/events/341442359289036/

**If you have any press contacts, please let them know about this amazing event!**

LOVIN' YOUR NOGGIN--A DISNEY FRIENDS FOR CHANGE/YSA COMMUNITY EVENT!
Join Ella in making hats and headbands for the children at CHOP losing their hair due to chemotherapy treatments. These kids experience a lot of pain and face many challenges. Receiving thoughtful gifts like these make them feel special. A hat or headband gives them a little normalcy in an otherwise not-so-normal situation. Let's love their noggin's and show them that people care. Let's give them hope and inspiration to continue their fight!

This is a free community service event brought to you by Hope for Ella and Disney's Friends for Change. Anyone can help!!! Young and old... crafty or not-so-much. We need folks that know how to knit, paint, make headbands, etc. to lead some of the craft tables. There will be activities for all level of crafting ability.

In keeping with Ella's vision please bring craft kits or games to be donated to CHOP to make the visits there a little more bearable or you can bring items for us to use to make lunch for our homeless friends on Terrific Treatment Thursdays!!! Items like Peanut Butter, Jelly, Tuna, Mayo, shelf-stable fruits, snacks/crackers/granola bars, bottled water. The above is not a requirement to attend the event but just a way to pitch in Hope for Ella's vision.

Saturday, April 13, 2013

H.O.P.E. for Ella

H.O.P.E. = Helping Out People Everywhere

Help us raise awareness of Neurofibromatosis Type 1, this genetic disorder that is causing Ella to lose her vision now in both eyes. For Ella personally, our prayers and positive thoughts are what is needed sent her way. For Ella's wishes of H.O.P.E. we can share everything we learn about Neurofibromatosis and help change the future of NF research and care; AND we can follow Ella's example of helping those around us every chance we get! There is a lot of wisdom in that little 7 year old body.



Please share HopeforElla however you can: verbally, on Facebook, Twitter, by email, regular mail...whatever form, as long as we share we really can change the world!






Wednesday, April 10, 2013

Chemo and MRI Updates

In this update:

MRI results, New chemo treatment, reaching 2500 "likes" on FB, and event reminders!

A tumultuous couple of weeks wrapped up with Ella's fever finally breaking and an MRI with general anesthesia (because of Ella's continued congestion, they could not perform a sedated MRI) scheduled for Friday. The MRI went well; finally Ella had a visit to CHOP that remained just for the scheduled process and no complications! While they "only" had to wait until Monday for the results (as opposed to the usual 2 weeks), still Terri was filled with worry, as any parent would be! Along with knowing the results would be received on Monday, the new chemotherapy regimen was also set to begin Monday and Terri has dubbed the new treatment day "Magical Medicine Monday". She is a wonderful Mama who strives to find any and all positives she can to present to Ella to keep our little NF hero upbeat as much as possible. Ella's Uncle John and Aunt Crystal thought of an incredible way to motivate people to "like" the FB page and help Ella try to grasp how many people are watching her page and praying/wishing for her: they said they would send Ella 2500 pennies when the page got to 2500 likes!

This new chemo treatment is made up of 2 medicines that are much faster acting which is good, but of course there is a bit of a double-edged sword because faster acting chemo means stronger and harder side effects. Terri shared a bit of her concerns:
I have to admit that I am very nervous for tomorrow's MRI results. I am always a little anxious but this time more than usual. I hope I can sleep. I am sure I will come home with great news to share but until then I will be a nervous wreck. Tomorrow's Magical Medicine Monday's treatment is gonna be particularly tough on our little Ella this is a 4 1/2 hour treatment and it is more potent since the first chemo regimen was deemed unsuccessful. Also because it is a totally different med we don't know how she will tolerate it. 
They arrived at CHOP at 9:30 in the morning and began their long day with the results from the MRI. The scans showed not only the optic nerve gliomas (brain tumors) that were known, but also neurofibromas (tumors that grow on nerve sheaths) that extend past the optic tracts, and thickening of the optic chiasm. I know with the medical wording it sounds complicated; here is a basic picture of the eyes and these areas in particular to try to help with explanation:
vispath
The Visual Pathway: From Eye to Primary Visual Cortex
from 
http://faculty.washington.edu/chudler/vispath.html


              
New with this MRI was views of the neck and spine. Shadowing was seen along her spine but the doctors are not yet considering them neurofibromas. However, neurofibromas are believed to be seen in her neck area on the left side near her lymph nodes. Praying and hoping this chemo quickly and effectively targets areas of concern and does what it is supposed to do--kick some tumor butt! 

Here are some of Terri's observations from the day:

We got home about 3 hours ago and then we had dinner and Ella fell right asleep. We were at CHOP for over 8 hours today!!! She slept through some of her treatment as well. This regimen already seems like it is gonna be a doozy!! She has the sweats/shakes and is very fatigued. We are gonna give it time. I am told these meds are fast acting so hopefully we will see results quickly! Good news is they think that we may see some vision return but there is no guarantee. More good news is that next treatment is less time (only 2 1/2 hours vs 3)!!! Also in the good news department is that she only needs these meds every two weeks!!! Please, please, please pray for Ella and that these meds do the job they are supposed to do and not take too much of a toll on her. We had such a good day despite some of the discoveries. It was a long day but we had fun coloring, doing crafts, signing and dancing with our IV pole and so much more!!!
And even after such a LONG day and already feeling some effects of this new chemo, our little NF superstar's mind and heart went right to other people:

 Because this was our first week having treatment on Mondays and we had a little break I didn't even think about preparing food for our homeless friends. So after the day she had the first thing she said as we were getting ready to leave is now to go take some food to those who need it. I was like OH CRAP!!! so we went down to the cafeteria and picked up some food and went on our way!!! Sure enough we ran into Morgan and passed along what we had... She said "THANK YOU ELLA" and Ella just squealed and giggled with delight!!!
After an emotionally, mentally, and physically challenging day Ella was asleep quickly (as Terri said, right after dinner) and Terri followed not far behind her, not before finding that a very, very heavy box had been delivered...full of pennies! Terri held onto it for whenever the Facebook Page  hit 2500 likes. That happened on Tuesday! Here is a link to the video of Ella with the pennies! 


Terri said that after she stopped recording Ella with the pennies and started to upload the video, Ella began to grasp what it all meant. 
 Ella was so touched she cried after I started to upload the video!!! She is in such disbelief that this many people are concerned about her and rooting for her!!! She started naming the pennies. I think I am stuck with 2500 pennies!!! AMAZING!!! THANK YOU!!!

Stay tuned as we gear up for some really excited things happening, including "Make NF Disappear..Laughing for a Cure!" on May 18th, click here for details or on Facebook https://www.facebook.com/events/467579583296341/ . Ella's school walkathon is April 26th, information is available here: Walkathon for Ella Details . Also in April, on the 28th, is the free event to help make caps, hats, and headbands for other kids going through chemotherapy sponsored by Disney's Friends for Change! Come out and help Ella Change the World! Details are available by clicking here for more information! **updated April 17th-click on the new blog post http://hopeforellanf.blogspot.com/2013/04/ella-is-part-of-disney-friends-for.html if you do not have a Facebook account. I apologize for not realizing you can't see the details of the FB page without an account.

One last note, remember to subscribe to the blog! Once you submit your email address to sign up, you can receive email notifications whenever a new post is created, meaning you'll get built in reminders of Ella's events, like the ones mentioned above and also reminders of Magical Medicine Monday so you remember to show your pink and/or send your messages of hope, love, and support for Ella.



Tuesday, April 9, 2013

Catch the Kindness Bug!!

Kindness is highly contagious...pass it along! 





Follow Ella's amazing journey via
www.facebook.com/HopeforElla ,Twitter @HopeforElla or tweet #HopeforElla
or of course here on the blog.



Thursday, April 4, 2013

Hope for Ella Walkathon!



Ella's elementary school is honoring hers journey with their annual walkathon on April 26th! How cool is that!!! All the kids in Ella's school are gonna learn about NF, walk in support for Ella and raise money for NF research!!! AMAZING!!! I still can't get over that they would reach out to us and support the cause of Ella's choice... CHOP, NF research!!! If you would like to sponsor Ella in the walk you can mail donations to

Hope for Ella, 
PO Box 71, 
Williamstown, NJ 08094 


or make a donation through PayPal here:

(Please use the special instructions section to specify this is for the walkathon)





Thursday, March 28, 2013

Your Wishes So Far, finalized finally

Finally...I think we have success in having the video. Cross your fingers!!

Changes...Feel Better Ella!

From Terri's posts on the FB page Hope for Ella on Facebook:
          
Monday, March 25, 2013
Thank you everyone for all of the birthday wishes!!! Ella had a wonderful birthday weekend with friends, family and fun!!! Almost felt like we were "Normal" again!!! Monday morning reminded us that we are not. While getting ready for school, Ella complained that she felt like she was going to pass out and throw up. She said her heart was beating really fast and that her hands and feet felt tingly. I told her to lie down for a bit and we will see how she is in a few minutes. I checked her temp and that was fine. I asked how she felt and she said the same and that her head and throat hurt too. I called over to CHOP and they told us to come in. Although I don't want to be running to CHOP everyday I was happy to finally feel that our team is on the same page as us. Not to say that our past Doc didn't care for Ella well... just didn't always feel we were doing all we could. Now I feel 100% that we are in the right hands. Tonight is gonna be crazy. I have to keep Ella up til midnight and then wake her at 3am. I have to keep her up to have a sleep deprived EEG at 7am. Then we have to have an MRI and chemo this week too. So this is gonna be a challenging week. I am headed to bed now so I can handle the next 24 hours. Any ideas to keep Ella up that's quiet so not to wake our 2 year old? Thank you so much!!!

Later on Monday, some emotional thoughts as Terri was having Ella concentrate on the memory of colors
On our way to CHOP this morning I asked Ella to close her eyes and asked her to tell me what colors feel like. She had such good answers. She told me white was like fur (polar bear) and clouds. Pink was like a soft blanket and cotton candy. Green was like grass and so on. I want to challenge her to think like this just in the event she loses all sight. I may be wrong and over dramatic. But she has lost so much so fast. I want her to remember what things look like just in case.

Here is Ella just before the Sleep
Deprived EEG

Ella had a fever while we were at CHOP for her EEG so they wanted to see her and gave her a tylenol. She started to put up a fight but then saw a little boy watching her and switched to showing him how to be brave and how to take pills like a big girl/boy! It was so cute. She said "This is how you take medicine when you are a big boy. You can be brave too." 








The day ended up being much longer for Terri and Ella because of the fever...they wouldn't let them go until the fever was down; what would have been about a 10am departure turned into a 3 pm departure. Ella was OUT and sleeping after the testing, while Terri met with their new medical team and discussed the new plans of action.

After the EEG



When we were on our way home I wasn't prepared to see Morgan (our homeless friend) so we had nothing for her. Ella was playing with her DS and I thought she wasn't paying attention. After we passed Morgan, Ella said "was that Morgan?" I said "yes, we didn't bring anything with us today so we can't stop." Ella said " Awww we should bring food every time we go to CHOP not just Thursdays. Mommy, we should adopt Morgan." Just melted my heart.





Everything is on hold right now; all medications were stopped by the new Dr. (including chemo) so she can get a "baseline" reading for Ella. They were to meet again on Wednesday to give Ella another MRI and plan the new route for chemo treatments, unfortunately with Ella being sick they can't do the MRI under sedation and would need her to have anesthesia. There were no appointments available for that type of MRI for another week, and without the MRI they can't plan the new course of chemotherapy. Talk about catch 22s!! Poor Ella now has a very bad cough and is sneezing like crazy. This week we are asking for Get Well wishes for our little hero!

Saturday, March 23, 2013

Setbacks and Moving Forward!

After Ella's treatment Thursday, we got not that greatest news from Terri:
So today was a rough day just as expected.....Today Ella's vision was tested because of the reports from her teachers that she was not able to see the board and all of the other symptoms she has been having lately. (Blurry vision, walking into walls, passing out, dizziness, numbness in limbs, headaches and more) Well the doc found that she is now basically blind in her left eye and this is VERY new and he can't say what could be causing this since her MRI showed positive changes with the tumors. That was a difficult test to watch. They want to test her again tomorrow just to be sure the test was accurate. Then we talked to her Doc and requested to change Doctors and that was an emotional roller coaster. Finally after she began her second chemo drug she began having an allergic reaction that caused trouble breathing, coughing, hives and as she shared afterwards... "it felt like my throat was closing". They immediately stopped the drip and gave her IV benadryl. She started to recover quickly. We just now got home....
We hoped for a better result when they went back on Friday, unfortunately it was confirmed her vision in her left eye is gone. Here are Terri's words from Friday:

I showed Ella all of your posts after we came home from a very upsetting Doctors appointment confirming the fact that she has lost vision in her left eye and she was so happy to see all of your birthday wishes. She was so touched and said "I can't believe all those people are thinking of me! I hope they all have happy birthdays too!" Then she was smiling and giggling at some of the posts/photos. Thank you to everyone who has sent her messages, cards, encouragement, well wishes, pics, etc. You are keeping her spirits up and that is so important. Thank you also to all of you who donated today through texting. We greatly appreciate it!! Together we will get money into the skilled hands that can find a cure for this baffling disorder!! your kindness means so much to our family!

You might be thinking, "THIS SUCKS!" We agree, wholeheartedly. Some of you might be thinking, "bad things keep happening for Ella, there's no answers, what's the  point?" That is when we have to say, in the words of F.U.N. "If you're lost and alone, and you're sinking like a stone, carry on! May your past be the sound of your feet upon the ground..carry on carry on!" The news of this setback has to propel us forward, we have to move into hyper speed in our mission to raise awareness of Neurofibromatosis!! Neurofibromatosis, Inc. Northeast recently reported that $15 million was appropriated to the Army's NF Research Program by Congress in spite of many cuts--how? By ordinary people like you and me calling, emailing, and sending letters to protest defunding the research for fiscal year 2013.

We won't give up, HopeforElla will fight on and carry the topic of Neurofibromatosis to every person we possibly can. Keep spreading the word, keep reading, keep learning all you can about NF. Share your links, your words, your experiences with us. Together we will change the future and make sure Ella, and all people with NF, know they are NEVER alone.



Wednesday, March 20, 2013

Tomorrow is Terrific Treatment Thursday & Ella's Birthday!!

Remember tomorrow is Terrific Treatment Thursday, time to flaunt your pink power for Ella! Upload your pictures and share them here on the blog, email them to hopeforella@gmail.com, or share on Facebook and Twitter. Ella gets so excited to see the pictures and all the creative ways people have rocked the Pink Power! This week we get a double dose of supporting Ella, because after tomorrow's TTT comes Friday which is......

Glitter Text Generator


You can post your birthday wishes the same way as listed above, and even include them in your Terrific Treatment Thursday comments DesiSmileys.com .In honor of Ella's birthday, Wish Upon A Hero has granted Hope for Ella a Text to Donate day!! Friday only, you can text the word WISH to 80077 to donate $5 directly to HopeforElla!!

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, March 14, 2013

Terrific Treatment Thursday Hero Area

You can comment here with any messages of support for Ella has she has Cycle 2, Treatment 2 of chemotherapy today. Cheery messages, jokes, riddles; as long as they are positive, post them! Pictures of you rocking your Pink Power can be sent to hopeforella@gmail.com , and we'll share all with Ella. As always, thank you!!

Tuesday, March 12, 2013

Ella says THANK YOU!!!

This child is so special, takes hold of everyone's heart and sends it back filled with love. I know it's hard to believe but these are only-Ella, spur-of-the-moment words. Enjoy!

Saturday, March 9, 2013

Share Hope for Ella!!

The ultimate goal of Hope for Ella is to grow research of Neurofibromatosis. That goal can only be accomplished by raising awareness, and we can only do that with you!

So many people have never heard of Neurofibromatosis (NF1 specifically, is the form affecting Ella), yet 1 in 3,000 people have NF1! This genetic disorder affects more people than several other genetic disorders combined. I'm not going to name them because I don't want this to seem to be minimizing any other person's pain and suffering.

There is neither cure nor specific treatment for NF; doctors can only treat the symptoms as they appear. While recently genetic testing has become available, the genetic testing is not 100% reliable and a negative result does not rule NF out. The only reliable diagnostic tools available to the medical community are:


  • observance of symptoms of neurofibromatosis, such as: cafe au lait spots (5 or more) or lisch nodules on the iris. 
  • MRI, which is complicated enough if performed on adults, even more complicated for children.


NF never goes away. The disorder may lay dormant in one person for his or her entire lifetime, in another symptoms may appear later in life, for others symptoms may come and go their entire life.The possibilities of how or when symptoms may appear are infinite and impossible to predict.

Even more disturbing is the variety of forms in which NF1 can display itself. Tumors can grow internally or externally, ANYWHERE outside the body and ANYWHERE inside the body. Literally anywhere you can think of: minor organs, major organs, muscle, tissue, joints, spine, bone, skin, scalp, leg, face..the list goes on and on. Tumors may not grow, a person (even children) may develop extreme hypertension, cardiac problems, scoliosis, vision loss or blindness, learning and behavior disabilities (thought to be formed by spongiforms on the brain, that may or may not resolve on their own), digestive difficulties, and possibly malignancies. Some people may develop some of these, or all of these, or all of the above!

Chemotherapy seems to be the only treatment that works for the tumors. Chemotherapy has its own horrid immediate side effects, and presents its own list of unknowns for the patients future health. Medications are being researched; however at this time, none have proven effective on any symptoms.

Our only hope to change the unknowns to SOLVED is spreading awareness to bring attention to neurofibromatosis and get more research to change the future for Ella, and the hundreds of thousands like her.

PLEASE SHARE our blog  by emailing your friends the link Hope for Ella Blog. Hope for Ella is on Facebook at www.facebook.com/HopeforElla, on twitter www.twitter.com/hopeforella or you can tweet #HopeforElla. You can purchase t-shirts, tickets to Ella's big event (info http://hopeforellanf.blogspot.com/2013/02/ellas-first-big-event-may-18th-2013.html ), or make a general donation to Hope for Ella; all payment links are on the right side of the page. However you can participate in helping Ella change the world, please do! Thank you!!

A Thank You for all the support!

This was a rough week, to put it mildly, for Ella and her family! The outpouring of supportive words, prayers, and positive vibes was overwhelming; and the pictures sent in are always appreciated. Thank you for helping to lighten the load ever so much!!



Together, we will change the future with Ella.

Thursday, March 7, 2013

Terrific Treatment Thursday Cheerleaders!!

So far....

video

Thank you and keep them coming! (music and more to come...)

Ella Updates

First, an apology for not posting since March 2nd!

As Ella was gearing up to start cycle 2 of chemotherapy, she passed out in school on Tuesday (March 5th). Terri brought her to the ER, where they ran test after test and, after not being able to figure it out, 7 hours later they decided she should be transferred to Children's Hospital. There, more tests were run including another MRI (it was actually an MRA, which inspects the blood vessels), and still nothing was found. The conclusion was that all of her symptoms (numbness in hands, balance issues, dizziness, nausea, breathing problems, blurred vision, and many others) could be attributed to chemotherapy effects--even though she hasn't had treatments the past 2 weeks. Ella received her chemo treatment last night since they were already there, and hopefully Terri and Ella will be released to go home sometime today. 

Sad Ella, waiting stinks!

YAY food finally! Smiling even with TWO IV's.


Breakfast--she's ready to get out of there, though the food is good ;)


We are still treating today as Terrific Treatment Thursday! There are already so many amazing and wonderful messages for Ella on the Facebook Page , and wishes are starting to come in on @HopeforElla on Twitter. Please keep them coming there, or even post your PINK POWER pictures or well-wishes here in the comments section! 

Thank you so much for all the support!!


Saturday, March 2, 2013

In honor of Dr. Seuss' Birthday....




Creativity Challenge!
Today is Dr. Seuss'
Wonderful birthday.
Leave comments in only
Dr. Seuss style today!! 

We'll judge the best rhyme, 
Using all of our eyes,
We'll choose one at random
And award a small prize!

Leave a comment below
With the best you can show!


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.
DesiSmileys.com
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!

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!


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!! ♥