Just 2 Weeks Until Long Beach 2010!!

Just 2 more weeks until the Long Beach Marathon! As most of you know I am serving as Team Captain of the NF Endurance Team in Long Beach, and attempting to break a 25 minute 5K on race day! I am ridiculously excited and anxious, I cannot wait to paint that course neon yellow in support of NF research!
With only 2 weeks to go I am still a bit far from my goal of raising $5000 for CTF. Please check out http://www.ctf.org/NF-Endurance/team-fundraising-dollars-at-work.html to see how CTF is investing this money. Every dollar truly does count, and our collective dollars are what make a difference. It is amazing what we can accomplish by working together. I know if we work hard enough we will see a cure for NF within my lifetime.
I want to thank all of you who have continued to support my fundraising efforts, and if you have not yet donated this year I hope you can take a moment to visit my fundraising page at: http://www.active.com/donate/nflongbeach2010/Olivia

If you are free on Sunday October 17th, come down to Long Beach to cheer on the Mighty NF Endurance Team! Contact me for more details if interested.

Just Keep on Swimming!

Last weekend we took a family trip to the lake, and I watched as JT determinedly swam a long distance to reach me at a floating dock. He cannot see without his glasses, has to wear goggles in the water, and is a new swimmer... so it was quite an accomplishment! He kept paddling, then looking up, and paddling again. He seemed to be getting tired and I kept yelling to him, "Just keep swimming baby! Just like Dory and Nemo! Just keep on swimming'!" He kept pushing, and soon he reached the dock all by himself with a huge smile plastered on his face.

The Long Beach Marathon is just 8 weeks away and we have already raised just over $1000 for NF research! Our team is growing by the day, and I am spending hours training every week to break my 5K PR (Personal Record!)

We still have quite a ways to go toward hitting my $5000 goal, but I know we can do it! CTF is the largest private funder of much-needed money for NF research and treatments. I refuse to give up hope that we will see a cure in my lifetime, and at the least J.T.'s! I know my baby boy is going to live a long healthy life because of the efforts we are making here. All we have to do is Just Keep Swimming'!!

If you have not done so already, I would ask that you take a moment to donate whatever amount you can on my fundraising page. Every dollar counts, and I appreciate your support more than you guys can know!

http://www.active.com/donate/nflongbeach2010/Olivia

A Leader is a Dealer in Hope

I cannot believe this year is flying by so fast! Before you know it the Long Beach Marathon will be upon us on Oct 17th. This year I am once again serving as Team Captain for the Mighty NF Endurance Team! I just built my new fundraising page including a spiffy new photo collage for this year's event and wanted to share it with you all, its at...

http://www.active.com/donate/nflongbeach2010/Olivia

(You can always reach my fundraising page my clicking the collage on the left as well!)

I have had my heart broken too many times by this disorder. As you all know I have lost 3 family members, but I have also lost friends. Too many over the years to count. I often receive emails from all over the country, even the world, asking my advice as someone who has had this disorder in their family for so long. I do my best, and stay active in the community, knowing that these people I grow to love will most likely lose the battle much too young. Friends who are my age and just do not wake up one day. I am tired of waking up to find another friend has died, another friend has been told there is no more to be done for them, another friend cannot walk, or hear, and they live so far I cannot even be there to offer a hug. What I can do is tell their stories. By informing more people about NF2 we encourage more donations and raise more money for research. The best way I know how to do that is to run, and so I do the only thing I can.

I am setting a goal of raising $5000 this year. I know it sounds like a lot, but I truly believe if I put my mind to it I can achieve this goal. There are actual clinical trials for drugs that can potentially STOP TUMOR GROWTH going on right now! CTF is the largest private funder for NF research, so by running with them I feel I am doing the one thing I can to fight back. I have to do something, because doing nothing is just not an option anymore. I am asking all my friends and family to join me by donating any amount that you can. Every dollar counts, and together we make a strong team! Together we can actually make a difference and fight back!

Thank you so much to each of you who has taken the time to donate, volunteer, or just offer friendly support! Please feel free to share this link with as many people as you want, there is power in our numbers!

Costume Benefit a Success!

Saturday night I dressed up as a french maid and tottered on my biggest heels to South Forty for the CTF Costume Benefit! I like to think that fun was had by all, and we raised $211 for CTF!! Groovy Myra won the Most Creative Costume, Masked Anthony won for Scariest, and Gypsy Willie took home the Sexiest Prize! Thank you to all my awesome friends who came, drank and learned a bit about NF!

Now that I have the party behind me I am focusing on the marathon, which is exactly one week away! I'll be leaving home Friday morning and working hard all weekend to run the NFET expo booth and support the team in any way I can! I'm looking forward to having a brand new medal to hang over my bed!

Bebu Moto Moto 433

Myra, Jolene and Anita as the Pink Ladies,
there's Paul in the back and George Lopez snuck in for a shot!

D-A-R-C-I lol

Fred & Willie with Miena and I

My BFF Adria as Erykah Badu!

Darci, Adria, Beth, Sharice, Ann Marie and Daniel

Jarrod, Corey, Paul and Anthony

The Knee Plan

This week I went for 2 slow runs, only 4 miles each, and each time around mile 3 my knee started to click. By the end of my run yesterday my knee had swollen again, and I knew if I wanted any chance at running the full marathon in 3 weeks I had to do something! I called Dr. J, he is my sports chiropracter and treats me pro-bono because he is absolutely awesome. I hadn't seen him in a while, life had been in the way, but he welcomed me with a warm smile and explained exactly what was going wrong with my knee... When you lay your legs flat with your feet flexed your knees should point straight up. Unfortunately mine point slightly in, some people's point out, everyone is different. As my feet strike the ground my knees bend slightly in, causing friction and tension to build along my outer knee, which is where I have the pain. Dr. J made chiropractic adjustments to my legs to train the muscle to move correctly. I can't exactly explain what he does, but when he starts working I can feel the difference. After making several adjustments he taped up my knee with K tape and sent me home with instructions to run with the tape on and take it off after 2 days.

I'm going to keep taking short runs when I can throughout the week, and rest in between. Next weekend I will try to run my last long training run and finally knock that 20 miles back! 20 miles sounds nothing less than daunting right now, but I know I can do it!

I will...

I'm sitting at a bus stop approximately 14 miles from my house. I have dirt smeared across my calves and salt extracting from my pores, but that doesn't bother me. All I can focus on is my knee, which is swollen and throbbing. At 10 miles into a planned 20 mile run with Jen and Holly my entire body felt good, but my knee digressed. What started as a dull ache became a sharp stab of pain with each step until, finally, I admitted defeat and stumbled to a stop. I told the girls to stick to the pirates code, they protested but I assured them I would survive. As they continued on without me, braided ponytails swinging neatly from side to side, I plopped onto this cement bus bench. I attempted to extend my knee and sucked my breath in sharply, waiting for the pain to subside, before calling Paul to come pick me up.

I wouldn't watch 3/4 of a movie, or return a book to the library after only reading half. Nobody likes a quitter, and as I hobbled over to climb into the car I looked longingly at the unfinished trail stretching toward home. I know I need to rest my knee, ice it, and slowly build my mileage back up. If I had limped through the rest of today's run, I would have no doubt sustained an actual injury and been completely unable to run the full marathon in Long Beach. Along with the nagging pain comes the self-doubt. How will I run 26.2 miles? It is so much further than I first estimated. My mind battles within, slinging comebacks at every complaint. Only .1% of the population finishes a marathon in their lifetime, and I am so close, there is no way I can stop now. I will finish the marathon... I will sell all of the tickets to the benefit I am throwing... I will pass my classes and transfer to a university... I will reach each and every goal I have set, and when I reach them, I will continue to set more.

*NEVER GIVE UP*

CTF Benefit Costume Party!!

5 weeks to 26.2!

As most of you know I was born with Neurofibromatosis type 2, a genetic disorder that causes tumors to grow throughout my brain and spine. I've had numerous surgeries and radiation, and lost 3 family members to the disease, including my Mom. My son JT has NF2 as well, and is my hero! At age 6 he is already visually impaired, but he never let's it stop him! He is obsessed with breakdancing and Michael Jackson, and uses sign language to help me wherever we are at.

Last year I joined the NF Endurance Team to raise funds for NF research and fight back! The NFET raises awareness and research dollars that enable treatments and a cure for neurofibromatosis.This year I am serving as Team Captain at the Long Beach Marathon, and am trying my hardest to bring as many people affected by NF together as possible for a day of running and celebration!

The Long Beach Marathon is now just 5 weeks away, and I will be completing my first 26.2 mile full marathon! If you have read my blog you know I have been struggling with the heavy weekly mileage during training, and have had doubts. I was thinking this morning that training for this marathon is so much like having NF2! It is a constant uphill battle, and I need to be prepared not just physically, but mentally. When I prepare for a surgery I go through a very similar process, working out to increase my muscle strength, and controlling my emotions in the face of an impending struggle. With at least 5 serious surgeries in my past, I know I am capable of running this marathon! After all, it's better than brain surgery!

So as I continue to train, and push forward, I want to thank all of you who have taken the time to donate on my donation page or volunteered to help us out on race day! In a time when all of us are being more careful with every dollar, it means so much to me to still see people donating to such a serious cause. CTF is making great strides in the fight against NF, funding research programs and clinical trials as well as promoting awareness! I am proud to be a part of such an amazing charity!

My fundraising goal for this year is $5000, and as of now I have raised $1,830! So right now I want to ask each of you to consider making a donation and helping me get closer to that goal! Every dollar counts, and I greatly appreciate any size donation. Donating is simple, just CLICK HERE! If you are unable to donate online and would rather write a check, please email me and I will get you set up right away.

4 Months to 26.2

I want to sincerely thank those of you who have already donated to CTF on my Active Giving page, and really gotten the ball rolling! We have already raised $400! We have 4 more months to reach my goal of $5000 for this year. I've been going on my long runs and really focusing on training, and when I feel like I can't take another step, I remember that I am running for all of you who have supported me this entire time.

Next month, on July 26th, I will run the half marathon at the San Francisco Marathon and am excited to run across the Golden Gate bridge! San Francisco holds special meaning to me. My Gramps has lived in the Bay Area since long before I was born, and the best part of every vacation in my childhood was visiting his beautiful home and spending time with him and my Grams, and now Diana. My Gramps has been a constant source of stability in my life, and will be at the SF Marathon to cheer me on! I cannot wait to see him at the finish line. We have agreed to dedicate this run specifically to my Mom, Kari, who we tragically lost a few years ago just 3 months before her 40th birthday. She was 39 and lived in a nursing home, unable to care for her most basic needs and completely deaf. On July 22nd she would have been 44 years old. When I run on the 26th I am not just running for her, but also for my Gramps, who has suffered the loss of a wife and 2 children at the hand of NF2. Nobody should have to live through that much pain in one lifetime, and still he handles it with dignity and grace, always caring for everyone around him and wearing a smile on his face. He sets the example for me that no matter how unfortunate a circumstance, life carries on and holds happiness for us all.

CTF is making great strides in the fight against NF, and even specifically NF2. All fundraising dollars donated on my page are specifically earmarked for NF2. A specific example of how this money is used is CTF's current funding of a clinical trial testing the efficacy of a drug called Lapatanib on NF2 vestibular schwannoma. For those of you who have been on this journey with me over the years, you know it is amazing that drug therapies are now visible on the horizon for NF2 patients!

CTF has given me a focus for my energy, a way to feel as though I am really making a difference and not just waiting for this disease to take over my life. CTF is helping me to fight back, and I am asking all of you to fight back with me by donating on my Active Giving page, http://www.active.com/donate/nflongbeach2009/Olivia

Thank you for your support and *Never Give Up*

Fundraising Time!

With only 5 months until I run the full 26.2 mile marathon in Long Beach for CTF, I am officially kicking off my 2009 fundraising campaign! Last year we raised over $3000, this year CTF is earmarking all the funds I raise specifically for NF2, and I have a new goal of $5000! As a community we can reach that goal and truly make a difference in the fight against NF2! Check out my brand new Active Donation Page and let me know what you think!

Stay tuned and check back here often for updates on the fundraiser, my running, and new contests to raise extra money for the cause!

3 weeks til Vegas!

Daylight Savings can kiss my ass. (Sorry Nani!) I hate that it gets dark so early! I can't fit a run in at all. Paul gets off early today so if it's not super hot I will finally head out for that 10 miles. Sunday I hope to repeat the 10 miles, then run 10 miles every 3-4 days for the next 3 weeks. Lofty goals, I know. With Las Vegas coming up I have real motivation. I just found out CTF will be in Vegas! Yeah! I didn't know that. I really love having a team to meet up with and run with. It makes everything so much more exciting.

As I have said before I wont actively email fundraise each run, but I am going to be having an actual fundraiser next weekend in Rancho Cucamonga to raise some money for CTF! More details will be coming soon!

Another Hill?

This morning I took Mica to her 45 minute playschool class and took off on a run. I raced down a local 1 mile hill then ran straight back up. It was a pretty steep hill so I felt a real sense of accomplishment as I jogged back to pick up Mica! I also wrote a letter for my fundraiser today to snail mail out to my contacts who are not online. Yes these people exist! No it's not my Nani, who is online all the time and plays casino games daily! Here is the letter, although I have raised my goal amount of $3000, I am still pushing to raise as much as possible in the next couple of weeks as I count down to my first fundraising race at Long Beach...

"Dear Friend or Family member,

As you probably know I was born with NF2, a genetic disease that causes tumors to grow throughout my brain and spine. The disease has left me deaf… I can no longer sit around a table and talk with my family… I have not heard music in 5 years, my head is filled with ringing and silence… I have never heard either of my children laugh…

NF2 has also put me through several difficult and painful surgeries. Worse, it has taken my Grandma Norma, Uncle Eric and Mom from me all at unbearably young ages. Even my son JT suffers from the disease already, he was born blind in his right eye. The only way to give JT and me a healthy future is to support research into drug therapies to stop the tumor growth associated with this horrible genetic disease.

Often times when family is afflicted with a painful disease we don't know what to do. We want to help, but don't know how.

The Children's Tumor Foundation is a great cause which focuses on finding a cure for NF2. We are very close to finding a drug therapy that can extend my life and give us true hope for a healthy future.

The NF Marathon Team is one of the tools the CTF employs to raise money. There are hundreds of runners participating in races all over the country. There are people with NF as well as family and friends on our team. I have been training and running for the past 6 months in preparation for the Long Beach marathon on October 11th, I will run 13.1 miles for a cure! I am asking you now to join me by donating in my name to CTF. Every little bit helps, and JT and I are forever grateful to all our friends and family who join us in our fight. Donating is easy, just write a check to "Children's Tumor Foundation" and return it with the attached slip in the pre-paid envelope!

Thank you all so much for your support, you can follow my progress as I run for NF2 at http://www.fabulousrunningmommy.blogspot.com/.

Love to All,

Olivia Hernandez and Family"

So You Think You Can... Run?

Today I am procrastinating on getting to the gym! It sounds so enticing to lie around watching “So You Think You Can Dance” with a nice glass of wine. Whenever I am having a hard time getting motivated I just visit my Active.com donation page and read through all of the inspirational comments people have left me over the last few months. Some of the comments say what I am doing is amazing, but I in turn find the comments inspiring, and see strength in every person who supports me. I can’t just take a day off, because I have given my word in exchange for peoples’ donations, and I take that very seriously. So everyday I commit to training I have to put my all in it, not just for myself, but for everyone rallying behind me! On that note, I am off to Bally’s. Today I am running 5 miles on the treadmill at an easy pace, then doing strength training, and finishing with deep stretching. What are you up to today? You, yes, you! You do know it is not too late to run with me? You can go here and click to join my team at the top! You can do anything from walking a 5k to running a marathon! You can choose to raise funds for NF2 or just walk/run for moral support! The Long Beach marathon is on October 12, and I would love to see all of you at the finish line!

You have to start somewhere....

It’s late in the day and I have most of my Mommy duties handled. Mica is napping and JT is watching TV as I feed my internet addiction. Not that I need another reason to be online but I have an interesting and important story to share, and with the help of one of my BFF’s have come up with the idea of blogging it! Isn’t this what all the hip mommies do now? Blog about their daily battles with random childhood issues. I hate to disappoint you all but this wont be that type of blog!

My entire purpose for beginning this blog is to track my daily journey as a young, Latina, late-deafened mother who was born with NF2. Nf2 is short for Neurofibromatosis Type II, a chromosomal disorder affecting 1 in 40,000 people. It causes tumors to grow anywhere in the body, but always on the nerve bundle controlling hearing, balance, and facial strength. I inherited the disease from my Mother, her and her brother inherited it from my Grandmother. Eventually I was diagnosed as a baby, and my own son JT was diagnosed at a very young age as well. Having NF2 means a shortened lifetime filled with MRIs, surgery, radiation, fear… and hope. Always hope.

I have made a commitment to raise money for the Children’s Tumor Foundation. CTF is dedicated to ending all forms of neurofibromatosis through research. There are other variants of the disease but I will be focusing on my own battle with NF2. You can always visit http://www.ctf.org/ for more precise information about the foundation.

CTF raises money in many ways, one way is the NF Endurance Team, a running team that participates in marathons all over the country building recognition and funds for CTF. I set my first goal this year to run the half-marathon (13.1 miles) on October 12, 2008 at the Long Beach International Citibank Marathon! My fundraising goal was originally $2,500. By email blasts alone I have raised almost the entire amount, and am now looking to raise as much as I can in the coming weeks while training to run safely and without injury. I am 11 weeks away and have been running and working out in preparation for months. As of this week I am buckling down into a strict training program.

Come back for daily updates! Each day I plan to share another piece of my NF2 history as well as my daily training report! Bookmark me and feel free to leave comments with questions or motivational words!

As always, Never Give Up Hope!