Saturday, May 31, 2008

You sure you don't wanna run?

(From Gloria on the Run, Baby, Run Listserve).

NOMINATION PAPERS are filed by candidates running as independents, who
want to be on the General election ballot.

Nomination papers can be signed by registered voters of ANY PARTY who
live in the district.

The number of signatures required is based on a kooky formula in the
Election Code. The candidate needs signatures equal to 2% of the
largest vote cast for any candidate elected, who ran for ANY office,
in that district, in the most recent election.

Plus there's something in there about being able to stand on one foot,
while patting your head and rubbing your stomach in a circular motion...

People, you're on your own with the math on this. For more info. check
out PA's Dept. of State site, call & bug them with your questions.

Collecting Nomination Papers signatures always starts on the 10th
Weds. before the primary, (this year that date was Feb. 13, 2008). The
filing deadline is on August 1, 2008.

{Perhaps we're more familiar with Nomination Petitions round these
parts. These are circulated by candidates seeking to get on the
primary ballot. Because almost all of our electeds are Democrats, many
consider the primary the 'real election'.}

Halp! Can I still get on the November ballot?

Yes you can.

NOMINATION PAPERS are filed by candidates running as independents, who want to be on the General election ballot.

Nomination papers can be signed by registered voters of ANY PARTY who live in the district.

The number of signatures required is based on a kooky formula in the Election Code. The candidate needs signatures equal to 2% of the largest vote cast for any candidate elected, who ran for ANY office, in that district, in the most recent election.

Plus there's something in there about being able to stand on one foot, while patting your head and rubbing your stomach in a circular motion...

People, you're on your own with the math on this. For more info. check out PA's Dept. of State site, call & bug them with your questions.

Collecting Nomination Papers signatures always starts on the 10th Weds. before the primary, (this year that date was Feb. 13, 2008). The filing deadline is on August 1, 2008.

{Perhaps we're more familiar with Nomination Petitions round these parts. These are circulated by candidates seeking to get on the primary ballot. Because almost all of our electeds are Democrats, many consider the primary the 'real election'.}

Friday, May 30, 2008

Attack Videos Against Kay Barnes

These videos are so amazing. I don't quite know exactly how to comprehend the idea that a candidate would pay and endorse these ads. I'm in San Francisco right now, so I got a huge kick out of the "San Francisco Values" theme of them.

Found via The Talking Points Memo.

-Agent Ska-

Thursday, May 29, 2008

Jim Webb as Veep?

Thanks to a link from Maria at 2 Political Junkies, I stumbled across this commentary from Melissa at Shakesville.

I resent the idea that sticking any old pair of boobs in the veep slot is
going to mollify the women who are rightfully angry with the way Clinton has
been treated by her own party during this primary (yeah, I'm looking at you,
just for a start), but I resent even more the notion that it doesn't matter at
all. Handing the veep slot to Webb on an Obama ticket would be a huge slap in
the face to feminists. I can think of almost nothing that would prevent me from
voting for the Democratic ticket this November, but putting Webb's name on it
would send me screaming Green without reservation—because it wouldn't just be
about Webb; it would be about the Democrats signaling that they just don't give
a shit about my vote.

Go read Melissa for a better description of why Webb represents a big step backward for the Ds. Are you shocked?

What about locally? Are the D's in touch with women's issues? Are we making progress and inroads as a constituency? I personally find it troubling that the first target of the anti-drink-tax folks (HosPAC) was a woman of color who was defeated by a white male member of an established political family. I find it troubling that our (gay people) champions are mostly white straight men. And I find the nasty old lady jokes about Catherine Baker Knoll troubling.

Is it trickle down anti-woman sentiment or trickle up?

Wednesday, May 28, 2008

More Details on the Show...

Slapsticks Comedy Proudly Presents "Four Funny Females"
this Saturday, MAY 31 at 8:00pm.
Join us this SATURDAY, MAY 31 at Slapsticks! Comedy Loft
for an eclectic mix of hilariously funny views from four very diverse comediennes!

-Reserve your tickets online and Receive $2.00 Off Admission-

Four Funny Females Showcase Eclectic Mix of Humor at Slapsticks Comedy Loft

What do a high brow British humorist, an Indian college student, a Italian Catholic rabble rouser, and a soft spoken teacher have in common? They are all part of the "Four Funny Females" comedy performance at Slapsticks Comedy Loft on Saturday, May 31 at 8:00 pm.

"There has never been a more eclectic mix of feminine comedic viewpoints gathered on one Pittsburgh stage," states Slapsticks owner, David Kaye. "It's rare that two female comics appear at a comedy club on one night in this town. An all female comedy performance is practically unheard of. Stand up comedy is traditionally a male sport in Pittsburgh, but the women on this show prove that they can write and perform as well, if not better than most of the guys."

"Eclectic mix" may be an understatement. Subhah Agarwal is a Carnegie Mellon University student whose parents immigrated from India. She has been performing comedy for over a year now. In this short time, she has risen quickly, performing at major clubs across Pittsburgh and Chicago. Drawing on her unique experiences growing up second generation Indian and female in America, she provides a creative perspective into every day situations while sharing personal experiences and opinions.

Sally Chopping lives in Pittsburgh but when you hear her crisp English accent you will think she just flew in from Buckingham Palace. She is a professional public speaker who gives keynote speeches on using humor for stress relief, listening skills and public speaking techniques. Her advice about improving public speaking skills has been quoted in the Wall Street Journal and the Pittsburgh Post-Gazette quoted Sally as saying: "Public speaking is more fun than sex." After that she got emails from dating agencies saying she needed help.

Nance Marshall is a middle-aged grade school teacher who leads a mild mannered life by day, but at night she takes off her babooshka and slings good natured barbs about dating, relationships, single life and her weight. Nance will make you laugh and think about how much you love your aunt Martha at the same time.

Gab Bonesso carries full bags of X-generation angst and Italian Catholic guilt on stage and dumps the contents into the lap of her audience. Feisty and ready to scrap, Gab prowls the stage vehemently defending her beliefs with expletives and exclamation points.

Be a part of Pittsburgh history and experience this truly liberating event. "Four Funny Females", it's like watching The View, Oprah, and Saturday Night Live all rolled into one hilarious live performance.

WHERE: SLAPSTICKS! COMEDY LOFT - Above The Royal Place Restaurant
412-920-JOKE (5653)

Four Funny Females
Nance Marshall - Gab Bonesso - Sally Chopping - Subhah Agarwal
Pittsburgh's Funniest Women of Comedy!
$10 Advance / $12 at Door


Tuesday, May 27, 2008

Top Five Pgh Political Issues

Like most political junkies in this town, I keep tabs on the Burgh Report. I noticed some comments about police brutality and cab services. A bit random, but it got me to thinking. These are issues I've heard a lot about recently when I've been speaking with people around this here town.

I think it's time for a "Top Five Pittsburgh Political Issues that I Care About".

1. Education
2. Public Transportation..and yes, now that I think about it, having a good cab service would be really nice, too.
3. Employment
4. Come to think of it now, police problems. Mostly, though, I know very little about the Citizens Police Review Board. How do they function? How are people appointed to this board?
5. Environmental decisions

...and you? I wonder what other people see as top issues?

-Agent Ska-

Bust @ City Theatre is wonderful

I can't think of anything more poetic for a title.

Saturday evening, Ledcat and I went to see Lauren Weedman's Bust at City Theatre. It is a one woman show chronicling Weedman's experiences volunteering at the Los Angeles Women's Jail in contrast to her everyday experiences in LA.

Weedman is great. She plays a dozen different roles and in about five minutes flat, you are completely pulled into the characters. Irene is a favorite of mine. She inhabits these roles.

I forgot everything. The whiny older women who spent 10 minutes finding the right seat. The guy to my right who shifted uncomfortably at anything remotely sexual. The prison matron wanna be docents who kept us all waiting because someone forgot to look for their glasses during the 15 minutes she was standing in the breezeway chatting with Irma. The glares when we snagged the last two seats with no seats in front of them. Even my resolution not to move to the left or right no matter what.

All gone. All that I experienced was the three women being helped by the project and the one who was transformed by it. And Irene. Today I am inspired to contact the Merton Center to see what I can do.

The other thing I kept thinking was that Gab Bonesso should follow this trail. She inhabits characters in her stand up routines and I think she could do it here, too.

If you have the chance, go see this performance. It runs through June 29, 2008 at the City Theatre.

Preview Week Performance Schedule
Thurs. May 22 & Fri. May 23 at 8 pmSat. May 24 at 5:30 pm
Sun. May 25 & Tues. May 27 at 7 pm
Press/Opening Night is Wed., May 28 at 8 pm.
Regular Run ScheduleTuesdays at 7 pm
Wednesdays thru Fridays at 8 pm
Saturdays at 5:30 & 9 pm
Sundays at 2 pm
There will be 1 pm matinees on Wed., June 4 & June 11.
Has anyone caught this show? Thoughts? Comments? Reactions?

Monday, May 26, 2008

Dear Detroit, please hire Anderson Varejao.

I was very disappointed that Cleveland's basketball team lost because I think that Anderson Varejao is cute. I had been hoping that I would get to stare at him repeatedly over a course of seven games. He's Brazilian. :-)

-Agent Ska-

Friday, May 23, 2008

Where My Ladies At?

Hello there fellow Women Bloggers!

I am writing to you today to plug my upcoming FEMALE only comedy show at Slapsticks Comedy Loft on May 31st, at 8PM. Yes that's right, ONLY comedians with vaginas will be performing. This never happens in Pittsburgh. This is a great chance for you to not only support the local comedy scene (shout out to Ms. Mon for stopping by the Obey House last night for some local comedy), but also to support the women's comedy scene (which sadly is very small). Veteran comics Nance Marshall and Sally Chopping are on the bill, as well as newcomer Subhah Agwarl. Tickets cost $10. The room is non-smoking and there is NOT a two drink minimum. If you want to buy tickets in advance, you can email me: and I can arrange to sell them to you. Otherwise, you can buy them at the door. (If you opt for the buying them at the door approach, please mention my name because I will get paid more money.) Slapsticks is located at 2660 Library Road (RT. 88). For more information you can call: 412.920.JOKE.

Love always,


Women Owned Businesses

Pittsburgh has many women owned businesses. This blog is a good place to let people know about them.

We vote everyday with our dollars.

A stroll down Lawrenceville's Butler Street will take you to: Gallery on 43rd St., Coca Cafe, Elements, Artemis, Pavement, Sugar Boutique, Crystal Bead Bazaar, The Framery I know I've probably forgotten a few.

The Gypsy Cafe on the Southside, Tazza d'Oro in Highland Park and Tonic restaurant downtown are also woman owned.

Thursday, May 22, 2008

Most Wanted

I've been thinking a lot lately about awareness in our communities.
I ponder the philosophy behind billboards dedicated to the memory of innocent victims in neighborhoods like Hazelwood and Garfield. I saw this article today about one of Allegheny County's most wanted fugitives having been arrested, and it got me thinking. What if everyone just knew what these people looked like? What if, when people who pose a threat to those around them went out in public, the public were informed? What if we were aware of which of our neighbors are on the sex-offender registry?

I recently had the opportunity to hear El Gray, program director for One Vision One Life, speak at an Allegheny UU service. This man spends his life intervening in our city's most violent and dangerous situations. And part of his message was that when we turn our heads and refuse to acknowledge the problems in our communities, we are all responsible for their being allowed to continue impacting and ending innocent lives.

I've decided simply to familiarize myself with a few resources and to engage in conversation. I encourage everyone to do the same.

Monday, May 19, 2008


If only Dan Onorato had realized that instead of freezing assessments, fixing the assessment system that allows a glaring number of wealthier property owners to get away with tax murder, he may have had a political platform (complete with leg) to stand on.

Apparently, though, freezing is all the rage these days. I just hope P.U.M.P. doesn't find itself in a similar, er, pickle.

This rebel has spoken. Or ahem, written.

Saturday, May 17, 2008

Happy Anniversary to The Society!

Hey ho! It was exactly one year ago today that our first post hit the blog. It took another five days to get a "real" content oriented posting, but a slow start is still a start.

In 365 days, we have grown to 36 female bloggers. That really exceeds my expectations. In fact, the entire project has evolved in a different direction from my expectations and I am quite pleased about that fact. The blog is our community, not a reflection of what happens between us during face to face meetings. We*are*creating a real presence in the blogosphere (or Burghosphere if you will) for women's voices.

Hurrah for us! And hurrah for frequent commenters -- Bram comes to mind -- who illustrate that there are people listening to our voices.

So Happy Birthday Pittsburgh Women's Blogging Society. Long may we write!

Friday, May 16, 2008

Being a Bridge in Pittsburgh

I had a high school teacher who always told me to a bridge. Obviously, she was not trying to encourage me to connect the Fort Pitt tunnels with downtown. She meant that I should make an effort to introduce people who might not otherwise meet one another. I've always remembered this and made an effort to do so.

It can sometimes be hard to meet other people in Pittsburgh. It's easy to stay on your side of the bridge (metaphorically and/or literally). I've started listening and talking with other people about how they meet other people. It's struck me that people really are opening to meeting other people-- they just need to meet them. Pittsburgh is a city full of bridges, so let's bridge.

For example, tonight is BlogFest at Finnegan's Wake.

WHAT: Pittsburgh Blogfest 14
WHEN: Friday, May 16, 2008, 5:30 PM to 9:30 PM and beyond
WHERE: Finnegan’s Wake (near PNC Park, 20 General Robinson St., North Shore, 412-325-2601), in the Pub Room
WHO: All local bloggers, vloggers, podcasters (and their friends!) and Pittsburgh Bloggers
COST: Free to attend

Let the Bridging Commence.


-Agent Ska-

Wednesday, May 14, 2008

Requirements to Run for Pgh. Mayor

Petitions: 250 signatures
Fees: $100 filing fee
Age: 25 yrs. old or older
Eligibility: resided in PA & Pgh. for 3 yrs.

Monday, May 12, 2008


Happ! Happy Birthday, Celeste Taylor!

Today is one of Pittsburgh's favorite activists' birthday!

I hope it's a good one, Celeste!

-Agent Ska-

I know, I know

We haven't even elected a President and already I'm talking about next year's race for Pittsburgh's Mayor. (There is no cure for my disease.)

Well, I'm not the only one talking and so far, everyone that's flapped their gums at me about the race is pretty much just mentioning male candidates.

I figure as long as wild, unfounded commentary & opinion is feeding the rumor mill, why shouldn't we take part?

Is there a woman YOU think should run for Mayor? If so, briefly tell us who & why.

Should we care if there are only male candidates running?

Would you just love it if a woman not only runs for Mayor, but throws her hat, a la Mary Tyler Moore, into the proverbial ring?

Should the female candidate(s) already hold office, work in government? Or should they be from another sector: business, non profit, medicine, law, the media or the arts?

Sunday, May 11, 2008


I'm a mother. I have a 15-year-old daughter, and 14-year-old and 8-year old sons.

There's nothing inherently special about being able to reproduce.

And what's so special about being a mom? I'm just doing what I'm supposed to be doing. Caring for the people that I chose to bring into this world. I don't deserve recognition for that. It seems silly to "reward" me with a gift.

I could use this space to brag about them -- oh, and how I could (which is bragging, and so I've already made myself a hypocrite) -- but I'm not going to. Instead of putting effort into boasting of their achievements, I think it's important to teach them the practice of quiet grace. By practicing it myself.

Nobody's child is more special than another. No mother is more important than another. No person is more important than another.

On Mother's Day, I reflect more on my legacy.

What will I leave behind for my children? What will I leave behind for all the children?

And even if you don't have children -- they are your legacy, too. What will you leave behind for them?

And that concludes this Sunday morning bedroom dispatch.

Friday, May 9, 2008

Congrats PittGirl!

The "Fans of PittGirl" Facebook group has now reached 327 members.

I just thought I would share that.

Agent Ska

Attn: Men

"Men living in polluted areas are more likely to go bald than those breathing cleaner air, a new study suggests.

The ground breaking research, by academics at the University of London, has linked the onset of male pattern baldness, to environmental factors, such as air pollution and smoking.

The scientists believe toxins and carcinogens found in polluted air can stop hair growing by blocking mechanisms that produce the protein from which hair is made. Baldness is known to be hereditary, but the new research suggests that environmental factors could exacerbate hair loss."

Rest here.

Every man out there should be worried about pollution now. Especially since I'm not really into balding men.

-Agent Ska-

Wednesday, May 7, 2008

Pop Culture takes on Politics.

"Will. i. am will be honored with A Webby Artist of the Year Award in recognition of his contribution to the political landscape with his making of the Obama videos."

Which Obama videos?

"Yes we can" here .

"We are the ones" here.

-Agent Ska-

I'd like to believe but so far the country hasn't voted in anyone I wanted for president since I've been old enough to vote.

My mom was in a cab on the way back from the airport a week ago. The driver brought up the election and told her that if Obama won, he would make America into a white slave country.

That's the kind of statement that makes me think that maybe America can't support someone who's actually diverse. Why can't my America support someone like Obama? I'd like to believe, really. really, really. but I dunno.


Monday, May 5, 2008

Dreams from my Father

My dad came to Italy to take some time off work and help me move all of my stuff back to the states. I didn't think I'd bought all that many clothes, until I started packing...

My dad bought Obama's book, Dreams from My Father, for the airplane. I have now hijacked the book and it's really good. I mean, honestly, I was close to tears.

It took me back to when I used to go to political events on rainy evenings. My friends asked me why I had to go if I wasn't getting paid. They just couldn't understand the importance of going. I finally started saying that I was getting paid, even though I still wasn't.

One of my regular meetings was the League of Young Voters. Somehow most of them were on rainy and slightly cold wednesday nights. Or at least, that's how it appears in my brain. Of course, the statistical probability is quite good seeing as it's Pittsburgh. Back to the main point.

There was this one night where it was raining and cold. These women came in to talk about how kids in the public schools in Pgh could go from being reprimanded and/or punished to quickly going into the Juvenile Delinquent system.

That's the type of meeting Obama talks about in this book. Getting a small group of people together in a local area to talk about local things.

I've named Obama "The Rainy Wednesday Night Guy".

Sidenote: In all fairness, I attempted to find Hillary's book in English but was unsuccesful.

It's quite a book. The idea that this guy is running for President makes me happy.


Agent Ska

Friday, May 2, 2008



i could post some scary pictures of surgeries, deformities
but truth is, most people look a lot like me. besides
we don't need to guilt or shock anyone into looking into donating or what ever.

i just want people to learn and understand and help if they want.
there are a few orgs. out there. check them out.

What are the neurofibromatoses?

The neurofibromatoses are a group of three genetically distinct but related disorders of the nervous system that cause tumors to grow around the nerves. Tumors begin in the cells that make up the myelin sheath, a thin membrane that envelops and protects nerve fibers, and often spread into adjacent areas. The type of tumor that develops depends on its location in the body and the kind of cells involved. The most common tumors are neurofibromas, which develop in the tissue surrounding peripheral nerves. Most tumors are non-cancerous, although occasionally they become cancerous over time.

Why these tumors occur still isn’t completely known, but it appears to be mainly related to mutations in genes that play key roles in suppressing tumor growth in the nervous system. These mutations keep the genes – identified as NF1 and NF2 – from making specific proteins that control cell production. Without these proteins, cells multiply out of control and form tumors.

An estimated 100,000 Americans have a neurofibromatosis (the singular form of neurofibromatoses) disorder, which occurs in both sexes and in all races and ethnic groups. Scientists have classified the disorders as neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and a type that was once considered to be a variation of NF2 but is now called schwannomatosis.

What is NF1?

NF1 is the most common neurofibromatosis, occurring in 1 in 3,000 to 4,000 individuals in the United States . Although many affected people inherit the disorder, between 30 to 50 percent of new cases occur because of a spontaneous genetic mutation from unknown causes. Once this mutation has taken place, the mutant gene can be passed on to succeeding generations.

What are the signs and symptoms of NF1?

To diagnose NF1, a doctor looks for two or more of the following:

six or more light brown spots on the skin (often called “cafe-au-lait” spots), measuring more than 5 millimeters in diameter in children, or more than 15 millimeters across in adolescents and adults;
two or more neurofibromas, or one plexiform neurofibroma (a neurofibroma that involves many nerves);
freckling in the area of the armpit or the groin;
two or more growths on the iris of the eye (known as Lisch nodules or iris hamartomas);
a tumor on the optic nerve (optic glioma);
abnormal development of the spine (scoliosis), the temple (sphenoid) bone of the skull, or the tibia (one of the long bones of the shin);
a first degree relative (parent, sibling, or child) with NF1.

What other symptoms or conditions are associated with NF1?

Many children with NF1 have larger than normal head circumference and are shorter than average. Hydrocephalus, the abnormal buildup of fluid in the brain, is a possible complication of the disorder. Headache and epilepsy are also more likely in individuals with NF1 than in the normal population. Cardiovascular complications are associated with NF1, including congenital heart defects, high blood pressure (hypertension), and constricted, blocked, or damaged blood vessels (vasculopathy). Children with NF1 may have poor linguistic and visual-spatial skills, and perform less well on academic achievement tests, including those that measure reading, spelling, and math skills. Learning disabilities, such as attention deficit hyperactivity disorder (ADHD), are common in children with NF1.

When do symptoms appear?

Symptoms, particularly the most common skin abnormalities -- café-au-lait spots, neurofibromas, Lisch nodules, and freckling in the armpit and groin -- are often evident at birth or shortly afterwards, and almost always by the time a child is 10 years old. Because many features of these disorders are age dependent, a definitive diagnosis may take several years.

What is the prognosis for someone with NF1?

NF1 is a progressive disorder, which means most symptoms will worsen over time, although a small number of people may have symptoms that stay the same and never get any worse. It isn’t possible to predict the course of any individual’s disorder. In general, most people with NF1 will develop mild to moderate symptoms, and if complications arise they will not be life-threatening. Most people with NF1 have a normal life expectancy.

How is NF1 treated?

Since doctors don’t know how to prevent or stop neurofibromas from growing, surgery is often recommended to remove them. Several surgical options exist, but there is no general agreement among doctors about when surgery should be performed or which surgical option is best. Individuals considering surgery should carefully weigh the risks and benefits of all their options to determine which surgical treatment is right for them. There are also surgical and chemical techniques that can reduce the size of eye tumors (optic gliomas) when vision is threatened. In addition, some bone malformations, such as scoliosis, can be surgically corrected. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy.

Treatments for other conditions associated with NF1 are aimed at controlling or relieving symptoms. Headache and epileptic seizures are treated with medications. Since there is a higher than average risk for learning disabilities, children with NF1 should undergo a detailed neurological exam before they enter school. Once these children enter school, if teachers or parents suspect there is evidence of a learning disability (or disabilities), they should request an evaluation that includes an IQ test and the standard range of tests to evaluate verbal and spatial skills. Children with learning disabilities are eligible for special education services under the provisions of the Individuals with Disabilities Education Act (IDEA).

What is NF2?

This rare disorder affects about 1 in 40,000 people. NF2 is characterized by slow-growing tumors on the eighth cranial nerve. This nerve has two branches: the acoustic branch helps people hear by transmitting sound sensations to the brain; the vestibular branch helps people maintain their balance. The tumors of NF2, called vestibular schwannomas because of their location and the types of cells that compose them (Schwann cells, which form the myelin sheath around nerves), press against and sometimes even damage the nerves they surround. In some cases they will also damage nearby vital structures such as other cranial nerves and the brainstem, leading to a potentially life-threatening situation.

Individuals with NF2 are at risk for developing other types of nervous system tumors such as spinal schwannomas, which grow within the spinal cord and between the vertebrae, and meningiomas, which are tumors that grow along the membranes covering the brain and spinal cord.

What are the signs and symptoms of NF2?

To diagnose NF2, a doctor looks for the following:

bilateral vestibular schwannomas, or
a family history of NF2 (parent, sibling, or child) plus a unilateral vestibular schwannoma before age 30
or any two of the following:

juvenile posterior subcapsular lenticular opacity (juvenile cortical cataract).

When do symptoms appear?

Signs of NF2 may be present in childhood but are so subtle that they can be overlooked, especially in children who don’t have a family history of the disorder. Typically, symptoms of NF2 are noticed between 18 and 22 years of age. The most frequent first symptom is hearing loss or ringing in the ears (tinnitus). Less often, the first visit to a doctor will be because of disturbances in balance, vision impairment (such as vision loss from cataracts), weakness in an arm or leg, seizures, or skin tumors.

What is the prognosis for someone with NF2?

Because NF2 is so rare, few studies have been done to look at the natural progression of the disorder. The course of NF2 varies greatly among individuals, although inherited NF2 appears to run a similar course among affected family members. Generally, vestibular schwannomas grow slowly, and balance and hearing deteriorate over a period of years. A recent study suggests that an earlier age of onset is associated with faster tumor growth and a greater mortality risk.

How is NF2 treated?

NF2 is best managed at a specialty clinic with an initial screening and annual follow-up evaluations. Improved diagnostic technologies, such as MRI (magnetic resonance imaging), can reveal tumors as small as a few millimeters in diameter, which allows for early treatment. Vestibular schwannomas grow slowly, but they can grow large enough to completely engulf the eighth cranial nerve. Early surgery, to completely remove the tumor while it’s still small, might be advisable to preserve hearing and balance. There are several surgical options, depending on tumor size and the extent of hearing loss. Some techniques preserve the auditory nerve and enable individuals to retain some hearing; other techniques may involve removing the nerve and replacing it with an electronic auditory implant in the brainstem to restore hearing.
Surgery is available to correct cataracts and retinal abnormalities. A strategy of watchful waiting might be more appropriate for slowly growing brain and spinal tumors, which have higher risks of surgical complications.

What is schwannomatosis?

Schwannomatosis is a newly recognized neurofibromatosis that is genetically and clinically distinct from NF1 and NF2. Like NF2 it occurs rarely. Inherited forms of the disorder account for only 15 percent of all cases. Researchers still don’t fully understand what causes the tumors and the intense pain that are characteristics of the disorder.

What are the signs and symptoms of schwannomatosis?

The distinguishing feature of schwannomatosis is the development of multiple schwannomas everywhere in the body except on the vestibular nerve. The dominant symptom is excruciatingly intense pain, which develops when a schwannoma enlarges, compresses nerves, or presses on adjacent tissue. Some people experience additional neurological symptoms, such as numbness, tingling, or weakness in the fingers and toes. Patients with schwannomatosis never have neurofibromas.

About one-third of those with schwannomatosis have tumors limited to a single part of the body, such as an arm, a leg, or a segment of the spine. Some people develop many schwannomas; others develop only a few.

What is the prognosis for someone with schwannomatosis?

Anyone with schwannomatosis experiences some degree of pain, but the intensity varies. A small number of people have such mild pain that they are never diagnosed with the disorder. Most people have significant pain, which can be managed with medications or surgery. In some extreme cases, pain will be so severe and disabling it will keep people from working or leaving the house.

How is schwannomatosis treated?

There is no currently accepted medical treatment or drug for schwannomatosis, but surgical management is often effective. When tumors are completely removed pain usually subsides, although it may recur if new tumors form. When surgery isn’t possible, ongoing monitoring and management of pain in a multidisciplinary pain clinic is advisable.

Are there prenatal tests for the neurofibromatoses?

Clinical genetic testing can confirm the presence of a mutation in the NF1 gene with an accuracy of 95 percent. Some families and doctors may choose to use a genetic test to confirm an uncertain diagnosis when there is no family history of the disorder and when waiting for additional symptoms to appear would put an unnecessary emotional burden on the family. Prenatal testing for the NF1 mutation is also possible using amniocentesis or chorionic villus sampling procedures. Genetic testing for the NF2 mutation is sometimes available but is accurate in only 65 percent of those tested. Genetic counselors can provide information about these procedures and help families cope with the results.

What research is being done on the neurofibromatoses?

The National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), is the leader in federal funding of research studying neurological diseases. The Institute sponsors basic studies aimed at understanding normal and abnormal development of the brain and nervous system, as well as clinical trials to improve the diagnosis and treatment of neurological disorders. In conjunction with the NIH's National Cancer Institute (NCI), the NINDS supports research focused on finding better ways to prevent, treat, and ultimately cure the neurofibromatosis disorders.

In the mid-1990s, research teams supported by the NINDS located the exact position of the NF1 gene on chromosome 17. The gene has been cloned and its structure continues to be analyzed. The NF1 gene makes a large and complex protein called neurofibromin, which is primarily active in nervous system cells as a regulator of cell division, functioning as a kind of molecular brake to keep cells from over-multiplying. In addition to work on NF1, intensive efforts have led to the identification of the NF2 gene on chromosome 22. As in NF1, the NF2 gene product is a tumor-suppressor protein (termed merlin or schwannomin).

Ongoing NINDS-sponsored research continues to discover additional genes that appear to play a role in tumor suppression or growth. Continuing research on these genes and their proteins is beginning to reveal how this novel family of growth regulators controls how and where tumors form and grow. Understanding the molecular pathways and mechanisms that govern these key proteins and their activities will offer scientists exciting opportunities to design drugs that could replace the missing proteins in people who have the neurofibromatoses and return their cell production to normal.

The NINDS currently supports basic and clinical research to understand how the genetic mutations that cause the benign tumors of NF1 can also cause abnormal development of neurons and neural networks during fetal development. This abnormal development can lead to the learning disabilities and cognitive deficits of children with the disorder.

The NINDS also encourages research aimed at developing improved methods of diagnosing the neurofibromatoses and at identifying factors that contribute to the wide variations of symptoms and severity of the disorders.

Just as important, the NINDS is supporting ongoing research with a large group of children with NF1 to help doctors answer the question that most parents ask when their child is diagnosed with the disorder: “What can we expect when our child goes to school?” Using MRI, which shows brain structure, functional MRI, which shows areas of the brain at work, and neuropsychological tests that measure specific cognitive skills, researchers are looking for associations between brain abnormalities and specific cognitive disabilities. Finding these links would give doctors an indication of the kinds of learning disabilities parents and their children could anticipate in the future and help them develop early intervention programs.

i tell people i've been checking E bay for years for a bargain on a 17th chromosome, but no luck.
virgin mary grilled cheese sandwiches and other such miracles but no undamaged 17's for sale
oh well. anyway, give a read, maybe find an org. and donate. there's one here in pittsburgh as well.