Happy Belated Memorial Day!

!

It seems with the holiday, our internet down, and some serious computer problems, I have fallen behind a week on the blog and missed my weekly post.

The entire week before memorial day, I spent hours upon hours pressure washing off our deck, cleaning it up, potting plants, and getting it ready for the birthday party we held for my dad last Monday. It was lots of work but totally worth it and now the deck is a pleasant outdoor extension of our home which is the perfect ambiance for us to relax and enjoy the summer before my upcoming surgery (I have not committed to a date yet but thinking the 24th or 31st of August. It just seems too soon from now though!).

I have been on 4 runs since the marathon (a 3, a 4, a 5, and another 3 mile Saturday night). I have been pretty much keeping to a weekly run, a weekly hike (4 elevation gain hikes since the marathon), a weekly water aerobics class, and my weight training 3 days a week with increased weight now - I had decreased the amount I lifted during the half marathon training).

I have to admit, I have been a little tempted to do one more half marathon at the end of the month with another NF organization but upon realizing the shortness of time, I just have to committ to completing the yard work (over an acre with TONS of weeding and trimming needing to be done), indoor organizing (massive piles of paperwork), and then I want to get in some hiking this summer and a little diving. Training for another half marathon would severely compromise all of that and interupt my responsibilities which with the rapidly approaching surgery, is taking on too much.

So my training now is focused on increasing my muscle mass in preparation for surgery and making my legs stronger so I can hike and dive. Of course, part of all this is finding ways to increase and maximize my energy levels too.

I am also engaging in the South Beach program with Harley in the attempt to wean myself off of sugar which I am having a difficult time doing. Yesterday I made a pan of brownies for a friend and Harley caught me sitting on the deck in the sun licking the chocolate off the beaters as if it was a new delight I had never experienced before.

In between all of this training and working, I have taken some time to fully savor the spring by visiting gardens and photographing the lovely rhodendrons in bloom which are nearly finished now. The photo of us above is in our yard underneath our delicate and lovely white cherry tree and some red rhododendrons in the background.

May was a great month but a very fast one! Happy June!

NF2 "Hope" Shot - Propolis Bio 30 cocktail

As a few of you know and I had briefly mentioned a couple months ago in one of my winter posts, I had pursued trying a supplement in an effort to stablize the tumors. In studies conducted in Germany and Japan, the propolis, harvested by honey bees, has suppressed tumor growth in mice grafted with NF2 tumors. There have been under a 100 people with NF2 worldwide taking it for a year with no adverse and serious side effects. Therefore, I figured what do I have to lose but my investment in trying in out? It is a health supplement anyway which would be beneficial to me whether it stopped the tumors or not. So why not give it a shot, eh?

The liquid supplement is known as Propolis Bio 30 manufactured by Manuka Health of New Zealand. Now there are other forms of propolis available in different parts of the world. However, the propolis from New Zealand is the most pure as the plants the bees harvest it from have the highest concentration of caffeic acid (the effective ingredient that contributes to tumor suppression). Further, it is this particular propolis that Dr. Hiroshi Maruta used in his research that suppressed tumor growth in mice.

Thus, in February I ordered a 3 month supply from Manuka Health in New Zealand to try out. On February 20th I took my first dose which is 6ml a day. By now I have finished an entire case and a half (18 bottles) and it will be time to order some more as I have developed a very appeasible method for taking it and it does not appear I have any allergy to it.

The propolis comes in little dropper bottles shown in the picture above. It is pretty sticky and does not taste fantastic so one really would not want to ingest it alone or use a nice glass (for my first dosage, I used a nice tea cup and the residue became stuck to the inside of the cup. I had to scrub hard with a scouring pad to remove it.)

On my first 2 tries it was awful but tolerable (I tried it in tea). So then I got a wild idea to put it in cocoa. BAD IDEA! I thought I was going to puke and had to force myself to drink it down as quickly as possible. Ok. So hot drinks did not work so well. I decided to try it with a very tart pomegranate supplement I had been taking which is full of antioxidants and aides the circulatory system which I sometimes have a problem with (I have Raynard's where I lose blood circulation in my hands at times.)

Wow! What a complete difference! It worked great and was yummy and was something I was taking anyway! Now I had an incentive to use the supplement more religiously instead of occassionally.

I read some great stuff on the ingredient Reservatol made from grape seed used in red wine and found in small quantities. I had tried out a capsule form of reservatol and found unexpectedly that it increased my endurance which was important for me when training for the half marathon. However, the capsule form was too expensive but guess what? A new liquid supplement which included reservatol, the pomegranate, and 14 other highly beneficial ingredients came out on the market! Therefore, I switched liquid supplements to give it a try. It is not as tart or as sweet as the Naturally Pomegranate made by Argo Labs but I have adjusted to the taste and really enjoy it!

Above is a picture of the bottle "Miracles Fruits of the World" by Drinkables. Both the Naturally Pomegranate and Miracle Fruits can be purchased at Costco Wholesale or direct online through the manufacturers.

Here is the recipe for the NF2 "hope" shot propolis bio 30 cocktail

needed-

small paper dixie cup

half of your Propolis dosage for the day (mine is 3 ml = 3 droppers)

a half ounce of the liquid supplement Miracle Fruits of the World or Naturally Pomegranate (the serving for each per day is 1 ounce)

Method-
-pour your half ounce of the liquid supplement juice into thedixie cup (I just cover the bottom of the cup, you do not need a lot)
-measure your propolis dose or just squirt the propolis directly in the center of the liquid trying not to get any on the sides of the cup

Voila! You have your NF2 "hope" shot! Drink the shot and then add some water to the cup to swash around and collect the remaining juice and propolis residue. Drink down (another shot!) and continue to do so until there is barely any residue remaining. I add water between 3-5 times.

Enjoy and Good Luck! :o)

P.S. - last week I stocked up on 2 more bottles of Miracle Fruits as Costco had a $6 instant rebate off per bottle.

Morning of the Run

This is what I look like at 4:30 am the morning of a half marathon. Of all the days during the 4 months of training, this is the ONLY day I was able to wake up at this time and actually start running at 7 am! (I am not a morning person) ;-)

Fortunately however, my father is! Therefore, I could count on him to be my alarm clock and get me up at on time. Thank God because I think it would be a struggle if I had to do it on my own!

So what does the morning of a marathon look like?

I groggily drag myself to the kitchen and down my supplements for the day:

half ounce of "Miracle Fruits of the World" with 3 ml of Propolis BIO 30 - AKA: My NF2 "hope" shot, meaning I and the rest of us with NF2 taking it hope it stops our tumor from growing.

Then I prepare myself my FRS energy drink (2 ounces orange flavored liquid concentrate in about 8 to 12 ounces of water) - Lance Armstrong's strategy for beating fatigue.

2 Rez-V reservatol capsules to increase my endurance ability (asw seen on Barbara Walters)

my breakfast of champions (LOL) which is a peanut butter banana toasted english muffin and some form of protein which happened to be a salmon patty on this particular morning.

Then I take 2 FRS sport chews and finish my drink.

Now that I am somewhat awake the ritual of personal hygiene and getting dressed comes into play (I showered the night before so I did not have to take time showering in the morning).

Mom, dad, and sis are all ready and I am ready so we head out the door for me to catch the last shuttle bus down to the start line which is at 6:40 am. (my parents live 20 minutes outside of Eugene so I stayed at their place).

On the drive over I was tossed on whether I should wear my rain jacket in the event or not as there was light rain on the way. Most of my training was in cooler weather and an entire state north. It had only started warming up in the last couple weeks before the marathon. The forecast however, was for a low of 44 degrees with light rain and the low is pretty much that early in the morning. When we left the house, the temp was about 50 degrees. I was not sure how much it would warm up as daylight approached and the morning progressed.

We were surprised to find a long line at the shuttle bus stop when we arrived and we were all concerned I would even be able to get on the last shuttle bus let alone arrive the event in time. There was only a tiny hotel shuttle bus present that had a capacity of maybe 20 but there were well over 50 participants waiting! Worse yet, there were only 20 minutes before the race started! Therefore, my sis and parents decided to wait with me to make sure I got on a bus to get to the marathon. In the event that I should not, they planned to drive me down as close to the start as possible and drop me off.

While waiting, the rain started to lighten up to a drizzle. Several people were just wearing shorts and a long sleeve technical shirt. I wondered if I would get too hot with the jacket and did not feel like wearing it tyed around my waist for nearly the entire run. Therefore, I decided to ditch it (dressed in a running skort, long sleeve technical shirt, and my running singlet over the top) and hand it to my sister when I hopefully got on a bus.

With luck, 2 or 3 large metro buses arrived about 12 minutes before the event. And yes, I did get on. A marathon walker sat next to me and looked a little anxious. I asked her if it was her first marathon to which she shook her head yes. Then we proceeded to have a pleasant conversation by my asking simple questions that I could predict the answers to somewhat understanding her response via lip reading (I am completely deaf so in spontaneous situations such as this without paper and with a workable person, I have strategies to which I can get by - ONLY if there is no other resort!).

Seeing I had walked the full Seattle marathon in 2006, I did much of the talking and mostly asked yes or no questions or ones which had very short answers. She came from an amazing family! Her husband and young son (maybe 9 or 10) was walking the marathon with her. Wow! How cool and admirable is that? - the whole family supporting each other! I was astonished that such a young boy was going to do it too and that he looked so excited!

Two minutes to the marathon and we were rounding the corners of the streets in downtown Eugene. "Will we make it in time we wondered? Gee, it was a good thing I went to the bathroom at the hotel BEFORE I got on the bus as there would be no time now for a pit stop."

Stay tuned for the rest of the story! :-)

National Institute of Health (NIH) Study

Check it out!

I just called over the phone today to the NIH to register for a natural history study of NF2. They are currently seeking participants for the study. Go to this link for the details:

NIH Natural History Study of NF2

Scam warning to all deaf and disabled!

So when I returned home from Eugene, I had a number of IM messages and some emails congratulating me. People that I did not know were aware, already knew how I did. I knew everybody except a couple of the messengers. One was the director of our nonprofit congratulating me on my fundraising efforts and my achievement in the half marathon run. Another message was from an instant messenger with the screen name "Deaf Claim Center". The person had said messages saying "hello", "congratulations", and had asked to be added to my messenger list.

I had assumed it was another person with NF2, another deaf person, or a representative from a deaf organization (in the previous week I was contacted via email by an organization in search of deaf high school athletes that I may know of). Therefore, in my tired state, I clicked "add" without thinking too deeply about who the person actually was. Over the next couple days, I recieved several IM messeges from "Deaf Claim Center" saying hello to see if I was online. I think it was last night that the person left a message stating that I won a prize through the Deaf Charity Organization that they were representing.

This morning I recieved 3 IM messages from this person and one inquired why I have not gotten back to him/her and that they only had 2 more days left for me to claim my prize. Pretty certain it was a scam but curious to find out what this was all about, I finally responded on day 4 which is today. I wanted to see if the person would actually try to prove they are legit and what he/she would do if I cornered them. The following is our IM conversation:

Deaf Claim Center: Why is it taking you too long time to redeem your winning prize..I am only using today and tomorrow to attend to winners of your date winning..

Rebecca Dufek: what is this about?

Deaf Claim Center: Its was actually a deaf charity organisation lottery..
Deaf Claim Center: Which you happened to be one of our lucky winners..

Rebecca Dufek: but I did not register for anything nor am familiar with your organization

Deaf Claim Center: The Entire Team of Deaf Charity organisation, Congratulate you on your Win of a Cash prize of $150,000.00 (One Hundred and Fifty Thousand Dollars) Only in today's Draw.
(Here is another hole I catch as I reread this. As I mention above, this person has been contacting me since Sunday. Yet, I won in the drawing which was held TODAY. Hmmn? So why was I contacted everyday for the previous 4 days?)
We are also Pleased to inform you that you have been verified.

Rebecca Dufek: what is the website of your organization?

Deaf Claim Center: We got millions of Email address from the the deafvp and deafconnect and our electronic System Randomly Picks 10 Lucky People to win $150,000.00 Cash prize each all in the effort of empowering the deafs and the disabled in general.

Rebecca Dufek: do you have some kind of legal documentation to back that up?

Deaf Claim Center: I have here a copy of your winning check,which i can send to your email..
Deaf Claim Center: You only need to claim your winning prize..

Rebecca Dufek: I prefer it sent via the US postal service
Rebecca Dufek: and how do I claim it?

Deaf Claim Center: We only use UPS to deliver the check to our winners..

Rebecca Dufek: ok that will do

Deaf Claim Center: We are Charity Organisations, Lending a Helping Hand to the Deaf, as we know that Disability is not Inability.

Deaf Claim Center: We are affiliated to Organisations Like NAD (National Association of the Deaf), UNAD ( United Nations Aid for Disabled)

Rebecca Dufek: so what is your web address?

Deaf Claim Center: Subsequent to the United Nations Disabled Day Held in texas in April 2009, we came up with a lottery tohelp the deaf through out the States.but u need to believe this cos it is real.

Rebecca Dufek: that is interesting because I have learned that the Deaf community do not view hearing loss as a disability

Deaf Claim Center: We are actually aware of scam going on on tthe internet about some pple trying to scam the deaf but i m happy to inform u that 7 of them have been arrested and now they are in jail so u have to be happy now
they are wicked people who dont have the fear of GOD in there heart they are indians living in america ours is serious busiiness and real and legal ....we are doing this all in the efforts of making the deafies happy and rich.

Rebecca Dufek: so how are you able to give money away during times of economic turmoil in our country?
Rebecca Dufek: why is there no information on your profile?

Deaf Claim Center: As matther of fact, the UNITED STATES GOVERNMENT is aware of this and also the department of IRS and we are compelled to give out the cash winnings to sucessful and lucky winners after they have met up with the laid down requirments and have been cleared

Rebecca Dufek: how can you prove to me that you are legit?

Deaf Claim Center: I am just your claim officer
Deaf Claim Center: Our System Randomly Picked your Email Address and a Unique Winning Number assigned to you.
Your Unique Winning Number is DL383/3992 pls write it down some where safe its very important plssssss

Rebecca Dufek: what are the "laid down requirements"?

Deaf Claim Center: I am your Claim Officer and i require More Information about you,In Order for me to process your Claim.
Provide me with the Following Information.
Winning unique No.: Full Name: Address: Sex: Marital Status : Job: age

Rebecca Dufek: so how are you going to prove to me that you are legit and not a scam artist?

Deaf Claim Center: Thats why you have a copy of your check,which i can email to you for you to see..

Rebecca Dufek: Again, where does the money come from and how many awards are you granting?

Deaf Claim Center: Alot but your concern is getting your own winner prize which only you demand me questions for...
Deaf Claim Center: Provide the above informations,so your profile can be updated on our computer now..

Rebecca Dufek: You have not answered my simple question and you are asking for very personal information
Rebecca Dufek: I would be happy to give that to you if you are able to prove you are legit
Rebecca Dufek: so far you have not done that and can be any scam artist quite easily

Deaf Claim Center: Okay how will i do that,you should contact our head office in California for more informations..

Rebecca Dufek: ok
(long pause and no response from the person)
Rebecca Dufek: hello?

Deaf Claim Center: I am here..

Rebecca Dufek: I am waiting for you to provide the information to your headquarters and your website

Deaf Claim Center: Hold on..I am on phone..
Deaf Claim Center: I am back..
Deaf Claim Center: What do you say you need?
Deaf Claim Center: Contact our head officer email claim-lottery@yahoo.com

Rebecca Dufek: I need an official business address, phone number, contactr person by name, and an official email. What you have provided is not a business email

Deaf Claim Center: Its all you need to do to contact our head officer..You are sounding too forward,and seem you want your prize to be given to a motherless babies home.

Rebecca Dufek: I am reading that you are a scam. If you are not, you would provide me authenticity that you are legit
Rebecca Dufek: if you were an actual nonprofit, you would provide what I have asked for

Deaf Claim Center: You are not guessing or reading right..You are only trying to be too forward..

Rebecca Dufek: you already made contradicting statements

Deaf Claim Center: Oh really?

Rebecca Dufek: are you actually deaf?

Deaf Claim Center: Good for me..As i wont have to waste my time explaining this to you again..

Deaf Claim Center: I am not a deaf.I work with the charity organisation period..

Rebecca Dufek: I am with a nonprofit and am aware that they have protocals and tax id numbers to prove they are legit
Rebecca Dufek: I am a fundraiser and am so inclined to prove I am not a scam

Deaf Claim Center: Sure you got it right,contact the email i gave you,then you get all of that,i am not in position to waste my precious time explaining that to you..

Rebecca Dufek: this is interesting. I am going to post our conversation on my blog which is read internationally

Deaf Claim Center: Thats good go ahead..

Rebecca Dufek: so one last time, what is the business mailing address, phone number, website, and contact number for this prize?

Deaf Claim Center: You got an answer.Go ahead and post the conversation cos people who reads it know how real it is..

Rebecca Dufek: so if you were in my shoes, you would gladly give out your personal information without any proof or verification that it is not a scam?

Deaf Claim Center: I told you to contact the organisation head office email i gave you,they are in position to review this to you not me..
Deaf Claim Center: Okay

Rebecca Dufek: LOL if you were legit and working for such a charity "non-profit" organization as you claim, you would provide me an official email and contact person and not a spam address.
Rebecca Dufek: How did you get my email anyway?
Rebecca Dufek: It is pretty sick that you are so desperate you are reaching out to innocent people with disabilities or deafness who may be completely unaware of what is going on
Rebecca Dufek: You will not mind me contacting the NAD if you are legit then.

Deaf Claim Center: Whats going on with you really?
Deaf Claim Center: You are just make conclusion that can land you in jail forever..

Rebecca Dufek: LOL I think you got that the other way around buddy!

Holes in Deaf Claim Centers claim

First of all, the profile for this person was completely blank! If the person actually representing a nonprofit charity and was official, the person would have listed the nonprofit organization, address, phone and fax, email, website, and their title if applicable in their profile. Somebody does not just work for a paid position for a charity and use their own personal email or IM account.

Secondly, throughout the entire conversation are numerous spelling errors and improper grammar. The dialogue is not presented in a professional business like manner. It is as if the person actually speaks english as a second language. This is one of the reasons I inquired if he/she was Deaf.


Immediately in the conversation, the person makes a comment about being affiliated with the National Association of the Deaf NAD) but then relates being deaf as a disability. This is highly contradictory information. In fact, many people from the Deaf community view their hearing loss as NOT a disability. When I briefly hint towards this, the person does not catch it and seems to be completely unaware. If in fact this person did represent a charity advocating for Deaf people, he/she would be aware of the community's cultural ideals. Deaf are a pretty tight knit group and those who are hearing involved with their organizations, are very close and familiar with their culture and values.

On SEVERAL occassions, I ask the person to provide some form of legitamacy by providing the contact information and website of the organization he/she is representing. EVERYTIME, my request is evaded and I never do get the actual information for the organization. All that the person has told me is that it is the "Deaf Charity Organization" and to contact an unofficial spam like address "claim-lottery@yahoo.com".

When I keep pushing for a physical address and contact info, the person starts to get defensive and reacts as if cornered. Politeness disappears and he/she tries several desperate tactics to gain my trust from reassuring that scam artists have been arrested to threatening to give my prize to "motherless babies" (who would definitely be more in need of financial assistance). Further, he/she starts making racial comments, throwing religion in the mix, and begins even questioning my reasoning as if there is something wrong with me for not agreeing to the scam.

"they are wicked people who dont have the fear of GOD in there heart they are indians living in america"

"Whats going on with you really?"

Further, "the claim officer" as the person professes to be, starts insulting me and ends with a completely absurd statement which does not make any sense what so ever.

"Sure you got it right,contact the email i gave you,then you get all of that,i am not in position to waste my precious time explaining that to you.."

"Good for me..As i wont have to waste my time explaining this to you again.."

After I tell the person I am going to expose them on my blog...

"You got an answer.Go ahead and post the conversation cos people who reads it know how real it is.."

"You are just make conclusion that can land you in jail forever.."

The more I push, the more the person gets desperate and changes tone and starts making threats and rude statements. This simply would not happen in a professional setting if this indeed were legit. The entire situation is full of holes and I hope this provides you with a good example of how to recognize them should you be contacted.

Be careful out there!

13.1 miles in 2:04:28; Eugene Half Marathon

Here I am the running the last mile. I was a little afraid to put forth too much energy on this last stretch because I saw people running in the opposite direction. I was worried I was going to have to run back the other direction before reaching the finish! hehe Thank goodness when I made it to the corner it was clear that those were people far behind and that I did not have to repeat that stretch!
The ribbons on my back are in memory and honor of donors or their family members with NF2.

At times of economical turmoil in this country, I am thankful, amazed, and honored for the support of many generous people! I know there are several very good causes out there and I am familiar with what it is like to have to be choosy as it is difficult to support them all. I am incredibly touched by those who recognized a real and dire need for NF2 research and chose to support my efforts. I am forever grateful to you and I know the rest of the NF2 community is also. For the 2009 half marathon, I raised over $5000 and miraculously met my fundraising goal by the event! Two weeks prior I was barely at a quarter way toward reaching my goal. I was a little worried as I knew after the event I would have to shift my focus to addressing another growing tumor over the next couple months.

It is not too late to donate and I will be able to accept donations on my fundraising page for the next month and checks throughout the remainder of the year.

For those far away or those near who sincerely would like to help with my current medical situation but do not have time to give, I would GREATLY appreciate a contribution of any amount you are able to offer and want to share toward my fundraising efforts for NF2 research.

Donations can be made securely online at my fundraising page at www.firstgiving.com/rebeccadufek

What is NF2 research?

Currently radiosurgery and surgery are ineffective at stopping the growth of our brain, spinal, and other tumors on nerves in the body. Researchers are working hard testing different theraputics to find one that will stop this cellular growth which causes hearing loss, vision loss, loss of balance or mobility, loss of motor function, and many other essential abilities needed to function normally (see my previous post explaining NF2).

Thanks again to all who helped me to acheive this goal and made it possible for me!

In the coming weeks and months, I will be discussing what is coming up next for me. So keep checking in and happy May NF Awarenss Month!

What IS NF2?

NF2 is the shortened name for the genetic disorder know as Neurofibromatosis Type II.

NF2 causes tumors to grow on cranial nerves in the brain and nerves within the spine. Tumors may also grow on nerves elsewhere in the body.

Due to the lack of the supressor gene Merlin, there is an overgrowth of the nerve sheath cells lining the nerves, brain, and spine. These cells are known as schwann cells and the tumors may also arise from the meninges (covering of the brain).

NF2 is not contagious nor something you can "catch". People with NF2 have had the disorder since birth. After conception when the cells are forming an embryo, the disorder is either inherited from a parent with NF2 or for an unknown reason, a spontaneous mutation occurs to the merlin protein needed to stop the cell replication process of the nerves.

Who Does It Affect?

50% of those with NF2 have inherited the gene and 50% are a spontaneous mutation.
(Which am I? Apparently, my mutation did not give me super human strength or the ability to climb walls! hehe)

New studies indicate that 1 in 25,000 people have NF2.

NF2 affects both sexes, all ethnicities, all around the world.

Generally, as the tumors grow, symptoms begin to manifest during the late teens to early adulthood (20s). However, there are cases of people being diagnosed later in life as well as younger children. With new testing and familiarity with the nature of NF2, I am seeing more children being diagnosed at earlier ages (3,5,7).

What Problems Does It Cause?

The most common manifestation of NF2 is hearing loss or total deafness caused by tumors growing on both auditory nerves (8th cranial nerves). These tumors are know as vestibular schawnnomas and they are the "hallmark" of NF2. ALL with NF2 eventually experience hearing loss.

90% of people with NF2 experience vision impairment due to ocular abnomalties, ocular tumors, tumor or brainstem compression, or facial paralysis. Such results in lack of tear production, inability to close the eye, inability to open the eye, blurred or double vision, or loss of vision entirely.

50% of those with NF2 have spinal tumors which cause pain or some sort of disturbance to normal function.

A common struggle among people with NF2 is the loss of balance function making it difficult to do simple tasks such descending stairs or trying to put on underwear while standing. Often those with balance dysfuntion have an awkward gait and stagger around like a drunk. A few of us have been confronted by law enforcement officers accusing us of being under the influence of a substance or drink. Some use a cane or need a wheelchair to get around.

Also common among many is muscular atrophy or "muscle wasting". At one point before I began a regular regimen of strength training (lifting weights at a gym), I could not carry around a simple shopping basket without falling over and it quickly became too heavy to carry.

Other side effects which have resulted from complications of the tumors or treatment: facial paralysis, muscle weakness and loss of coordination in the hands, a condition known as "drop foot", facial pain or pain in the extremeties known as neuralgia, numbness in the hands, feet, legs, and face, tooth decay from lack of saliva production "dry mouth", swallowing or eating difficulties, chronic body pain, mental cognition difficulties, on rare occassion cancer, and in many case early morbidity (shortened life span).

Please visit our memorial page in memory of our young friends who have lost their lives to NF2: In Memory of Friends Lost to NF2

The Difficulty in treating NF2 - No Cure

As compared to brain tumors known as acoustic neuromas which are much more common in the general population, vestibular schwannomas grow faster and more aggressively.

Schwannomas infilterate the nerves making them surgically difficult to remove without causing permanant damage to the nerves and other critical atructures such as the brainstem.

The tumors that tend to be less uniform in shape having a nodular and bumpy composition or with tentacles, make both surgery and radiosurgery more complicated.

Even after radiosurgery and surgery, the tumors often grow back.

References

http://www.dinagoldin.com/anarchive/nf2.htm

http://www.theuniversityhospital.com/nf/aboutnf2.htm

http://www.advocurenf2.org/01_understandingnf2.html

http://www.nf2crew.org/

http://ghr.nlm.nih.gov/gene=nf2

http://www.genecards.org/cgi-bin/carddisp.pl?gene=nf2