Bonjour a tous!
Je m'appelle ASSIA, 27 ans maman d'un garçon qui s'appelle haroun et
est agé de presque 8 mois!
Il est atteint du SSW qu'on a découvert quand j'étais enceinte de 8
mois! Apparemment c'était une première dans cette maladie!
C'était un choc j'ai beaucoup pleurer mais j'ai décider de le garder,
de lui donner sa chance et pour moi de toute façon cela équivalait à
un meurtre car celui-ci était former et bougeait dans mon ventre
c'était inconcevable!
Il est née le 10 février 2008 sans aucun souci, mais les problème on
commencer quand il a eu un mois! C'était éprouvant, dur, de voir un
petit bout de chou crisé de cette façon sans s'arreter de squater la
réa car ne respirait pas tous seul et qu'on a pas trouver encore le
traitement qui le stabilise! il est sortit fin juin stabilisé avec 3
molécules: TEGRETOL,DIACOMIT,EPITOMAX! Il n'a refait que 2 crises en
juillet et depuis ca va j'en profite un max car une rechute éxiste
après son parcours!
C'est son cerveau droit qui est touché et il a un gros angiome sur la
face droite, son oreille, son cou, son torse, tous son bras droit et
il a aussi quelques taches partout dans le corps!
Il a un gros risque de glaucome car sa tension augmente et fais du
kiné 2 fois par semaine!
On nous propose du laser pour ses taches j'attend qu'on me renseigne
sur qui il va voir et ou aller là je suis un peu perdu, il risque de
rechuter après le laser donc j'aimerai avoir des info sur ce parcours
et d'autres info sur les autres risque de la maladie!
J'habite à lyon et aimerai savoir s'il y a un cas comme Haroun dans
ma région!
Je vous lis beaucoup et espère vous donner souvent des nouvelles!
A BIENTOT!

sympa benoit d'avoir ajouté ta photo. j'espère que les autres suivront,
c'est sympa de savoir qui on est.  Je m'appelle Delphine. Je vais
m'inscrire au deuxième groupe pour suivre les messages sur les 2.
salut à tous.

----- Original Message -----

From: ode0601

To: strugewebernr@...

Sent: Wednesday, April 04, 2007 1:44 PM

Subject: [strugewebernr] fédération maladies orphelines

le 16 juin 2007 il y a la journée nationale des associations membres de
la FMO dans laquelle l'asso est recensée, je voulais savoir si quelque
chose était prévu.Perso, je vais peut être me "nez-rougiser" avec mon
mari à montpellier mais je ne sais pas encore quelle action mener. si
vous avez des idées...

--- Dans strugewebernr@..., "ode0601" <ode0601@...> a
écrit :

bonjour,
j'ai reçu l'invitation au groupe par benoit, mais il y a deux groupes
yahoo sur le sturge weber et je me suis retrouvée inscrite sur l'autre
dans lequel il n'y a personne , d'où peut être quelques problèmes de
discussion. histoire de j'ai ajouté ma photo, cela permet de se
connaître. Bonne nouvelle pour moi , je passe de quadrithérapie pour
l'épilepsie en trithérapie. bonne journée à tous et bon courage avec
le
SSW.

--- Fin du message transféré ---
  Essayez de vous reconnecter au forum "syndromestrugeweber" afin de
tous se retrouver sur celui avec l ortograhe exacte et desolee pour ce
probleme

--- Dans strugewebernr@..., "ode0601" <ode0601@...> a
écrit :
>
> bonjour,
> j'ai reçu l'invitation au groupe par benoit, mais il y a deux
groupes
> yahoo sur le sturge weber et je me suis retrouvée inscrite sur
l'autre
> dans lequel il n'y a personne , d'où peut être quelques problèmes de
> discussion. histoire de j'ai ajouté ma photo, cela permet de se
> connaître. Bonne nouvelle pour moi , je passe de quadrithérapie pour
> l'épilepsie en trithérapie. bonne journée à tous et bon courage avec
le
> SSW.
>

Bonsoir  le premier groupe ou il y q "plus" de monde celui ou tu as
ecrit est le premier que j ai fait celui ci on arrive a lire les
differents messages mais il y a une erreur dans le libelle ; j'ai
ecrit stRuge au lieu de sturge ... ce qui explique que j'en ai fait un
autre mais il n y a qu'Isabelle  Je vais essayer de faire un copier
coller pour que nous nous retrouvions sur celui sans faute  Par contre
je n'ai pas reussi a voir ta photo   Nadine

le 16 juin 2007 il y a la journée nationale des associations membres de
la FMO dans laquelle l'asso est recensée, je voulais savoir si quelque
chose était prévu.Perso, je vais peut être me "nez-rougiser" avec mon
mari à montpellier mais je ne sais pas encore quelle action mener. si
vous avez des idées...

bonjour,
j'ai reçu l'invitation au groupe par benoit, mais il y a deux groupes
yahoo sur le sturge weber et je me suis retrouvée inscrite sur l'autre
dans lequel il n'y a personne , d'où peut être quelques problèmes de
discussion. histoire de j'ai ajouté ma photo, cela permet de se
connaître. Bonne nouvelle pour moi , je passe de quadrithérapie pour
l'épilepsie en trithérapie. bonne journée à tous et bon courage avec le
SSW.

bonjour,
j'ai reçu l'invitation au groupe par benoit, mais il y a deux groupes
yahoo sur le sturge weber et je me suis retrouvée inscrite sur l'autre
dans lequel il n'y a personne , d'où peut être quelques problèmes de
discussion. histoire de j'ai ajouté ma photo, cela permet de se
connaître. Bonne nouvelle pour moi , je passe de quadrithérapie pour
l'épilepsie en trithérapie. bonne journée à tous et bon courage avec le
SSW.

Bonjour,

Je ne parviens pas à me connecter au groupe et à envoyer des messages.

Isabelle.

> Message du 16/03/07 à 22h56
> De : "Nadine Renaud"
> A : strugewebernr@...
> Copie à :
> Objet : Re: [strugewebernr] Deux personnes souhaitent être inscrites
>
>

>

 bonsoir Benoit

 

Vous devriez recevoir une nouvelle invitation  Je n'ai pas pu/su changer ma faute d'orthographe alors j'ai tout refait

j'ai invite aussi les noms que vous m'aviez communiquer

j'espere que ca va marcher !!

 

Amicalement

Nadine
>
>  

Le 14/03/07, Nadine Renaud <nadinerc@gmail.com> a écrit :

 Bonjour Benoit

Hier soir je n'ai pu me connecté car j'étais sortie

Je vais essayer de changer le nom du forum avant d'inscrire les personnes

Je vous tiens informée

 

Nadine
>
>  

Le 13/03/07, GUYON Benoit <benoit.guyon@renault.com > a écrit :

>

Bonjour,

 

suite à la réunion MSN de mardi dernier 06/03/207, deux personnes ont demandé à être inscrites sur la liste sturge weber en français.

Voilà leurs adresse :

ode0601@orange.fr

isabelle_cury@voila.fr

 

Pouvez-vous leur envoyer une invitation ou les inscrire directement au groupe ?

Merci

 

Peut-être à ce soir.

 

Benoit

 

PS : est-il possible de renommer le groupe sur Yahoo (pour corriger le stRugeweberRN?)

 

----- Original Message -----

From: Benoit Guyon

To: strugewebernr@yahoogroupes.fr

Sent: Wednesday, February 28, 2007 9:29 AM

Subject: premier message

>  

> Voilà je me suis inscrit. Le processus est simple.

 

Après vérification, en fait nous avions déjà créé un groupe avec Yahoogroupes en 2004 mais il n'avait pas fonctionné faute de  participants.

 

J'espère que ce coup ci ça marchera mieux.

 

En tout cas ça marche ! Et ça sera moins contraignant que nos rendez-vous du mardi soir sur MSN. Merci pour la mise en place de ce groupe.

 

Benoit.

>

>

---

-- Disclaimer ------------------------------------
> Ce message ainsi que les eventuelles pieces jointes constituent une correspondance privee et confidentielle a l'attention exclusive du destinataire designe ci-dessus. Si vous n'etes pas le destinataire du present message ou une personne susceptible de pouvoir le lui delivrer, il vous est signifie que toute divulgation, distribution ou copie de cette transmission est strictement interdite. Si vous avez recu ce message par erreur, nous vous remercions d'en informer l'expediteur par telephone ou de lui retourner le present message, puis d'effacer immediatement ce message de votre systeme.
> ***
> This e-mail and any attachments is a confidential correspondence intended only for use of the individual or entity named above. If you are not the intended recipient or the agent responsible for delivering the message to the intended recipient, you are hereby notified that any disclosure, distribution or copying of this communication is strictly prohibited. If you have received this communication in error, please notify the sender by phone or by replying this message, and then delete this message from your system.

>

>

>

>

>

>

----- Original Message -----

From: Benoit Guyon

To: strugewebernr@...

Sent: Wednesday, February 28, 2007 9:29 AM

Subject: premier message

Voilà je me suis inscrit. Le processus est simple.

 

Après vérification, en fait nous avions déjà créé un groupe avec Yahoogroupes en 2004 mais il n'avait pas fonctionné faute de  participants.

 

J'espère que ce coup ci ça marchera mieux.

 

En tout cas ça marche ! Et ça sera moins contraignant que nos rendez-vous du mardi soir sur MSN. Merci pour la mise en place de ce groupe.

 

Benoit.

From: sturgeweber

To: strugewebernr@...

Sent: Thursday, March 08, 2007 2:21 PM

Subject: [strugewebernr] Re : molécules contre le glaucome (Lucentis et Avastin=noms américains/laboratoire Genentech) (découvertes après recherches sur malformations/prolifération des vaisseaux sanguins)

Non je ne connais pas d'ophtalmo pointu sur ce domaine

Par contre j'ai noté avoir fait une erreur dans le nom du forum ce
qui empecherait une eventuelle recherche par un moteur de recherche
j'ai ecrit stRuge au lie de stuRge Peut être faudrait il
recommencer ?? Qu en oensez vous ??
--- strugewebernr@yahoogroupes.fr, GUYON Benoit <benoit.guyon@...>
a écrit :
>
>
>
> Article intéressant diffusé le newsgroup Sturgeweber USA le 22/02
On y parle d'un traitement du glaucome par un médicament peu cher
mais non validé. Je ne sais pas encore s'il s'applique au Sturge-
Weber. Cependant on y parle (vers la fin de l'article) de
prolifération de vaisseaux sanguins et de recherche sur les cause de
cette prolifération ("vessel stimulant VEGF, or vascular endothelial
growth factor.
> Later they sequenced the gene for VEGF"). Ca a quand même beaucoup
l'air de toucher notre syndrome. Il faudrait trouver un
ophtalmologue compétent sur ce sujet. J'en connais un que j'ai vu a
un congrès sur le glaucome il y a deux ans. Je vais essayer de le
concter.
> Sinon connaissez vous un ophtlmologue pointu ?
>
> Benoit
>
> PS : désolé l'article est en anglais...
>
> Genentech and what's it mean to me?
> Posted by: "Karen Ball" kball@...
> Thu Feb 22, 2007 10:01 am (PST)
> Mornin'
>
> Here's an article that could/should be of interest to those of you
with
> glaucoma and retinal involvement. We recently had two SWF partners
treated
> with Avastin due to their complications related to SWS. I'm
sharing this
> Wall Street Journal article with y'all because there may be a
potential for
> these drugs to work in SWS and we'd like to keep you apprised in
the event
> there are future studies at the Centers of excellence. At this
point in
> time, there is no known relationship between AMD and SWS but the
link
> obviously is the VEGF and vascular component. We'll keep you
posted and
> invite your feedback as always....on a side note:
>
> I visited a lab yesterday where they were doing brain surgery on a
> mouse...amazing and crossing our fingers it will one day yield a
mouse model
> of SWS, PWS which we need to truly make strides in treatment!!
I'll be in
> D.C. March 8-10 and again March 19-21 if anyone wants to visit!
Anne will
> shortly be posting the spring conference and travel schedule so we
can "Meet
> and Greet"....LOVE IT! Y'all take care,...Karen
>
> BLIND AMBITION
> Genentech's Big Drug
> For Eyes Faces a Rival
>
> Intended for Other Use,
> Cheaper Injection Is One
> of Its Own Products
>
> By MARILYN CHASE
> February 22, 2007; Page A1
>
> SAN FRANCISCO -- For some of her patients at risk of blindness,
retinal
> specialist Anne Fung injects the drug Lucentis, which costs nearly
$2,000 a
> shot. For those who have less health coverage, she offers a shot
of another
> drug, Avastin, that costs around $40.
>
> The two drugs are both made by Genentech Inc. They work similarly.
Doctors
> say both can be effective in preventing or even reversing vision
loss. But
> only Lucentis is approved by the Food and Drug Administration to
treat eye
> problems.
>
> Over the recommended two-year course of monthly injections into
the eye, the
> bill for Lucentis reaches nearly $50,000. While Medicare covers
80% of the
> treatment cost for the elderly, some patients must pay the rest
themselves.
>
> The Lucentis-Avastin showdown has thrown the pharmaceutical world
into a
> tizzy. Genentech, fearful that a potential billion-dollar-a-year
product
> could be headed down the tubes, is urging doctors to stick to
Lucentis and
> its proven efficacy in treating age-related macular degeneration.
Doctors
> are weighing benefit and cost -- and often choosing to roll the
dice with
> Avastin, although it is approved only as a cancer treatment, to
ensure that
> less well-off patients get treatment.
>
> Now the federal government is hoping to settle the dispute by
funding a
> head-to-head comparison of the two biotechnology drugs, the first
such trial
> by the National Institutes of Health. If Avastin works as well as
Lucentis,
> the government's Medicare program for the elderly could save $1
billion or
> more a year, officials say.
>
> The mutiny by doctors nationwide against a high-priced drug -- and
> Washington's willingness to go to bat for them -- is triggering
alarms in
> the drug industry. "Industry doesn't want an equivalency trial
where there
> could be decisions on coverage. They are terrified," says William
L. Rich,
> director of health policy at the American Academy of
Ophthalmology, which
> backs the NIH trial.
>
> Some say the trial is the first step toward making the U.S.
resemble
> Britain. There the government studies the cost of drugs versus
their
> effectiveness and refuses to pay for those that fail to make the
grade.
> "It's a backdoor to what the U.K. does," says Anthony Adamis, chief
> scientific officer for a unit of OSI Pharmaceuticals Inc. that
makes
> Macugen, a similar eye drug.
>
> For Genentech, the world's second-largest biotechnology company by
revenue
> after Amgen Inc., the stakes are high. Lucentis was a surprise hit
after its
> June 30 launch, logging $10 million in sales on its first day and
$371
> million in the second half of 2006. Eric Schmidt, an analyst at
Cowen & Co.,
> estimates the figure could reach $900 million this year and rise
to $1.3
> billion by 2011.
>
> Genentech has refused to provide any funding or drugs for the NIH
trial,
> scheduled to start in April. The Biotech Industry Organization
says the NIH
> should be studying cutting-edge science, not comparing two
approved drugs.
> Genentech's head of business development, Joseph McCracken,
adds: "If I were
> trying to decide how to spend NIH's money, I might not think this
is the
> best way."
>
> Leading Cause of Blindness
>
> Age-related macular degeneration is the most common cause of
vision loss in
> people over age 65 in the U.S. Between 1.2 million and 1.4 million
people
> have lost vision due to AMD, and some 7.3 million are at risk. "The
> prevalence of disease is going to increase as [life] expectancy
increases,"
> says Frederick Ferris, clinical director of the National Eye
Institute, part
> of the NIH. "This all points to an epidemic of AMD 20 years from
now."
>
> Doctors are using Lucentis and Avastin to treat "wet AMD," a type
of the
> disease in which overgrowth of blood vessels and leakage of fluid
cause
> gross swelling of the macula, a part of the retina.
>
> On a recent visit, Yevgeniya Erlikh, a 78-year-old Russian
immigrant, stared
> stoically, her eye numbed and propped open, as Dr. Fung in San
Francisco
> injected Lucentis to try to save her sight. "One, two, three,
finished,"
> said Dr. Fung. Scans showed Mrs. Erlikh's fluid-swollen retina
returning to
> normal. She now can see the big "E" on the eye chart from 20 feet
away.
>
> Avastin fights cancer by halting the growth of blood vessels that
sustain
> tumors. The FDA approved it as a cancer treatment in 2004.
>
> More than a decade ago, research suggested that taming vessel
overgrowth
> might also be used to treat diseases of the eye. But based on
early tests in
> monkeys using a similarly sized molecule, Genentech thought the
Avastin
> molecule was too big to penetrate the retina. Its scientists spent
two years
> re-engineering it to create Lucentis, which then underwent seven
years of
> testing.
>
> [Chart]Later doctors would say that Genentech was wrong to reject
Avastin
> for the retina so quickly. But after the company's painstaking
work to make
> Lucentis, it had little incentive to re-evaluate Avastin as an eye
> treatment.
>
> In July 2005, Genentech reported the results of a big Phase III
study of
> Lucentis before a hushed crowd of 2,000 at a medical meeting in
Montreal.
> The studies showed it halted blindness in 90% of people with AMD
and
> improved vision in 30%.
>
> "There was an audible gasp," recalls George Williams, chairman of
> ophthalmology at the Beaumont Eye Institute in Royal Oak, Mich.
Lucentis
> "was so much better than anything else." Previously the disease
was treated
> with less-effective drugs, photodynamic therapy and lasers --
"like using a
> blowtorch to stop weeds," says Dr. Fung in San Francisco.
>
> The only problem: Approval would take another year.
>
> Then came an apparent solution: At the same meeting, Philip
Rosenfeld, a
> professor at the Bascom Palmer Eye Institute of the University of
Miami
> Medical School, presented a case of a patient who had been going
blind and
> was injected with Avastin. The patient's retinal scans
dramatically improved
> a week after treatment and vision began to regain sharpness over
six months.
>
> "We got to rejoice for all of 30 seconds," recalls Genentech's
Charles
> Semba, the development leader for Lucentis.
>
> Rather than wait until Lucentis was approved by the FDA, many
doctors
> grasped at the next best thing. With the help of compounding
pharmacists who
> siphoned tiny doses of Avastin into small syringes, eye doctors
tried it in
> thousands of patients. In large doses for cancer, Avastin costs
$55,000 a
> year. The dose used in the eye costs just $20 to $100.
>
> "People thought we were cowboys, but we were doing it in our
patients'
> interests," says Robert Avery, an ophthalmologist in Santa
Barbara, Calif.
> "When people are going blind, they're willing to take risks."
>
> Even after Lucentis received FDA approval last year, many doctors
stuck to
> Avastin because a comparable Lucentis injection costs
$1,950. "This is a
> public-health issue," says Dr. Rosenfeld of Miami. "I believe in
profit but
> things are out of proportion."
>
> In December, the FDA sent a warning letter to one compounding
pharmacy in
> New England, saying the practice of splitting Avastin doses
carries a risk
> of contamination and other problems. The FDA said it may seek an
injunction
> to stop that pharmacy from splitting Avastin if it doesn't fix
problems.
> L.D. King, executive director of the International Academy of
Compounding
> Pharmacists, says he considers the letter "overreaching" and part
of a
> broader crackdown on compounding pharmacists, though he knows of
no other
> FDA moves involving Avastin so far.
>
> Last month, the American Society of Retina Specialists found in a
survey
> that doctors preferred Avastin over Lucentis 76% to 9% for their
Medicare
> patients. Even when patients had supplemental insurance policies
that
> covered the patient's cost, the margin was 51% to 43%.
>
> The Mom Test
>
> Genentech argues Lucentis is the only product shown to safely
restore vision
> and Avastin remains unproven as an eye treatment. "I've seen
anecdotal
> reports. They're impressive. But they're still single-case
reports," says
> Susan Desmond-Hellmann, the company's president of product
development. She
> cites the mom test: "If my mom had [AMD], I'd want her to get the
drug that
> is safe and effective."
>
> The Issue: Genentech sells a drug for eye disease at $2,000 a
dose. Some
> doctors are using a similar but cheaper Genentech drug as a
substitute.
>
> Why It Matters: Genentech profits could take a big hit if the
practice
> spreads. If the substitute isn't safe, patients could suffer.
>
> What's Next: A federally funded trial will compare the two drugs.
>
> Retired San Francisco businessman H. William Jansen, 79, recently
took his
> fourth injection of Lucentis and minutes later confidently took
the wheel of
> his silver Jaguar. "I think we've got this thing on the run," says
his
> doctor, H. Richard McDonald, who is a consultant to Genentech but
has
> publicly questioned Lucentis's price.
>
> Others swear by Avastin. Harry Ulmer, an 80-year-old retired
mechanic on a
> fixed income in Bakersfield, Calif., says he can play gin rummy
and drive
> his 2001 Toyota thanks to the drug. "Avastin does the job and it
is priced
> right," says Mr. Ulmer, a patient of Dr. Avery in Santa Barbara.
>
> Genentech, in justifying the cost of Lucentis, says its trials of
the drug
> included more than 6,000 patients who received vision tests,
retinal scans
> and monthly doctor checkups. It was "one of the more expensive
clinical
> trials we've run," says Ronald Park, team leader for pricing. He
notes that
> older drugs for AMD cost nearly $1,000 a dose without improving
vision.
> Lucentis "is a breakthrough drug for a very bad disease," says Dr.
Park.
>
> The company also reasons that Lucentis could prevent disability,
falls,
> broken hips and depression associated with blindness. The elderly
blind
> "become more dependent on those they love to drive, get food, help
around
> the house. Until you've seen someone who was independent go blind -
- and
> I've treated these folks -- you don't understand how terrible this
can be,"
> Dr. Park says. The American Academy of Ophthalmology this month
said
> blindness costs the health-care system more than $2 billion a year
including
> nursing-home care.
>
> Finally, Genentech says it is happy to help those who can't afford
Lucentis.
> Since Lucentis's approval last summer, 15,000 patients have called
the
> company's assistance programs asking about the drug, a spokeswoman
says.
>
> The scientist who made the discovery behind both the Avastin and
Lucentis
> programs is Napoleone Ferrara. After medical school at the
University of
> Catania in Sicily, Dr. Ferrara came to the University of
California, San
> Francisco, to study how blood vessels feed tumor growth. There he
got
> interested in a growth factor for vessels.
>
> Joining Genentech in 1989, Dr. Ferrara and colleagues reported
they had
> isolated the vessel stimulant VEGF, or vascular endothelial growth
factor.
> Later they sequenced the gene for VEGF and worked on protein
molecules
> called monoclonal antibodies that block it. That led to Avastin.
>
> In addition to the monkey studies that suggested Avastin molecules
couldn't
> reach the retina, there were other reasons Genentech didn't push
the drug
> hard as an eye treatment. Avastin was designed for cancer patients
who need
> the drug to stick around in their bodies to do its work. Although
that could
> raise the risk of cardiovascular problems associated with Avastin,
it was
> worth it for cancer patients facing a terminal disease.
>
> For elderly people with eye disease, Genentech wanted a drug that
would home
> in on the retina, do its work and quickly get eliminated from the
body. The
> drug it found, Lucentis, binds 20 times better to VEGF in retinal
cells and
> is safer, Dr. Ferrara says.
>
> "This isn't Avastin Jr.," insists Dr. Semba, the Lucentis
development
> leader.
>
> But some specialists say the two drugs, despite their differences,
might be
> equally effective. Dr. Avery, who has a research appointment at the
> University of California, Santa Barbara, decided in 2005 to do the
kind of
> study Genentech had long ago lost interest in performing. He and
Israeli
> colleague Anat Loewenstein injected Avastin into rabbits' eyes. The
> conclusion, says Dr. Avery: "Hey, this does get through the
retina." They
> published the findings in the journal Retina in February 2006.
>
> Moreover, in a safety challenge to Genentech, Dr. Fung in San
Francisco
> teamed up with Dr. Rosenfeld in Miami, devising an Internet survey
to seek
> swift reports of serious side effects from Avastin.
>
> In a snapshot of more than 5,200 eye patients on Avastin, their
survey found
> four strokes including one death in a person with risk factors, an
> unsurprising rate for older people, the doctors reported in the
British
> Journal of Ophthalmology in November 2006.
>
> Lucentis itself may raise stroke risk. In late January, Genentech
sent out a
> "Dear Doctor" letter noting that patients taking the recommended
dose of
> Lucentis had a higher rate of strokes (1.2%) than patients taking
a smaller
> dose (0.3%).
>
> NIH Trial to Start
>
> With billions of dollars at stake and medical questions
unanswered, the
> National Eye Institute plans to start a two-year trial in May or
June to
> compare safety and efficacy of Avastin versus Lucentis. While the
NIH has
> previously run tests comparing newer brand-name drugs against
older and
> cheaper generics, this is the first time it is pitting two brand-
name
> biotech drugs against each other, says Dr. Ferris, the eye
institute's
> clinical director. He says the government must conduct the study
because it
> needs to ensure that the widespread use of Avastin is safe.
>
> Daniel Martin, chair of ophthalmology at Emory University School of
> Medicine, is leading the NIH trial and has selected 45 test sites
for it. He
> offers his own mom test. "If I were treating your mom, you'd want
me to know
> which drug is better," he says. "And if they're equal, why not use
the
> less-expensive one?"
>
> However, funding for the trial remains uncertain. In part because
the
> government has to purchase all of its Lucentis and Avastin
supplies, the eye
> institute says it can't afford to fund the trial on its own and is
seeking
> help from Medicare.
>
> Barry Straube, chief medical officer of the Center for Medicare
and Medicaid
> Services, says he welcomes the trial as a guide for reimbursement
policy,
> but lawyers for the agency have said it lacks legal authority to
use the
> Medicare trust fund for such research expenses. Dr. Martin says
the NIH has
> awarded $16.2 million for the trial and he'll seek additional funds
> elsewhere if needed.
>
> Officials at the center, which administers Medicare, project that
Lucentis
> could over time cost taxpayers more than $1 billion a year and
possibly as
> much as $3 billion annually. Dr. Straube says he would be pleased
if that
> figure can be reduced. "Not only are we interested in preserving
the
> Medicare trust fund, but we're sensitive to the higher co-
insurance payment
> Medicare beneficiaries would have to pay," he says.
>
> Genentech says some of the projections of the Medicare impact are
too high,
> noting analysts' estimates that this year's total sales will fall
short of
> $1 billion.
>
> For the moment, the company's data suggest Lucentis has captured
about 55%
> of the market in new cases of AMD. Doctors' surveys suggest
Avastin has
> captured much of the rest. That "unique situation," Executive Vice
President
> Ian Clark recently told analysts, "will challenge our rate of
growth of
> Lucentis in 2007."
>
> -- Disclaimer ------------------------------------
> Ce message ainsi que les eventuelles pieces jointes constituent
une correspondance privee et confidentielle a l'attention exclusive
du destinataire designe ci-dessus. Si vous n'etes pas le
destinataire du present message ou une personne susceptible de
pouvoir le lui delivrer, il vous est signifie que toute divulgation,
distribution ou copie de cette transmission est strictement
interdite. Si vous avez recu ce message par erreur, nous vous
remercions d'en informer l'expediteur par telephone ou de lui
retourner le present message, puis d'effacer immediatement ce
message de votre systeme.
> ***
> This e-mail and any attachments is a confidential correspondence
intended only for use of the individual or entity named above. If
you are not the intended recipient or the agent responsible for
delivering the message to the intended recipient, you are hereby
notified that any disclosure, distribution or copying of this
communication is strictly prohibited. If you have received this
communication in error, please notify the sender by phone or by
replying this message, and then delete this message from your system.
>

Non je ne connais pas d'ophtalmo pointu sur ce domaine

Par contre j'ai noté avoir fait une erreur dans le nom du forum ce
qui empecherait une eventuelle recherche par un moteur de recherche
j'ai ecrit stRuge au lie de stuRge  Peut être faudrait il
recommencer ??  Qu en oensez vous ??
---  strugewebernr@..., GUYON Benoit <benoit.guyon@...>
a écrit :
>
>
>
> Article intéressant diffusé le newsgroup Sturgeweber USA le 22/02
On y parle d'un traitement du glaucome par un médicament peu cher
mais non validé. Je ne sais pas encore s'il s'applique au Sturge-
Weber. Cependant on y parle (vers la fin de l'article) de
prolifération de vaisseaux sanguins et de recherche sur les cause de
cette prolifération ("vessel stimulant VEGF, or vascular endothelial
growth factor.
> Later they sequenced the gene for VEGF"). Ca a quand même beaucoup
l'air de toucher notre syndrome. Il faudrait trouver un
ophtalmologue compétent sur ce sujet. J'en connais un que j'ai vu a
un congrès sur le glaucome il y a deux ans. Je vais essayer de le
concter.
> Sinon connaissez vous un ophtlmologue pointu ?
>
> Benoit
>
> PS : désolé l'article est en anglais...
>
> Genentech and what's it mean to me?
> Posted by: "Karen Ball" kball@...
> Thu Feb 22, 2007 10:01 am (PST)
> Mornin'
>
> Here's an article that could/should be of interest to those of you
with
> glaucoma and retinal involvement. We recently had two SWF partners
treated
> with Avastin due to their complications related to SWS. I'm
sharing this
> Wall Street Journal article with y'all because there may be a
potential for
> these drugs to work in SWS and we'd like to keep you apprised in
the event
> there are future studies at the Centers of excellence. At this
point in
> time, there is no known relationship between AMD and SWS but the
link
> obviously is the VEGF and vascular component. We'll keep you
posted and
> invite your feedback as always....on a side note:
>
> I visited a lab yesterday where they were doing brain surgery on a
> mouse...amazing and crossing our fingers it will one day yield a
mouse model
> of SWS, PWS which we need to truly make strides in treatment!!
I'll be in
> D.C. March 8-10 and again March 19-21 if anyone wants to visit!
Anne will
> shortly be posting the spring conference and travel schedule so we
can "Meet
> and Greet"....LOVE IT! Y'all take care,...Karen
>
> BLIND AMBITION
> Genentech's Big Drug
> For Eyes Faces a Rival
>
> Intended for Other Use,
> Cheaper Injection Is One
> of Its Own Products
>
> By MARILYN CHASE
> February 22, 2007; Page A1
>
> SAN FRANCISCO -- For some of her patients at risk of blindness,
retinal
> specialist Anne Fung injects the drug Lucentis, which costs nearly
$2,000 a
> shot. For those who have less health coverage, she offers a shot
of another
> drug, Avastin, that costs around $40.
>
> The two drugs are both made by Genentech Inc. They work similarly.
Doctors
> say both can be effective in preventing or even reversing vision
loss. But
> only Lucentis is approved by the Food and Drug Administration to
treat eye
> problems.
>
> Over the recommended two-year course of monthly injections into
the eye, the
> bill for Lucentis reaches nearly $50,000. While Medicare covers
80% of the
> treatment cost for the elderly, some patients must pay the rest
themselves.
>
> The Lucentis-Avastin showdown has thrown the pharmaceutical world
into a
> tizzy. Genentech, fearful that a potential billion-dollar-a-year
product
> could be headed down the tubes, is urging doctors to stick to
Lucentis and
> its proven efficacy in treating age-related macular degeneration.
Doctors
> are weighing benefit and cost -- and often choosing to roll the
dice with
> Avastin, although it is approved only as a cancer treatment, to
ensure that
> less well-off patients get treatment.
>
> Now the federal government is hoping to settle the dispute by
funding a
> head-to-head comparison of the two biotechnology drugs, the first
such trial
> by the National Institutes of Health. If Avastin works as well as
Lucentis,
> the government's Medicare program for the elderly could save $1
billion or
> more a year, officials say.
>
> The mutiny by doctors nationwide against a high-priced drug -- and
> Washington's willingness to go to bat for them -- is triggering
alarms in
> the drug industry. "Industry doesn't want an equivalency trial
where there
> could be decisions on coverage. They are terrified," says William
L. Rich,
> director of health policy at the American Academy of
Ophthalmology, which
> backs the NIH trial.
>
> Some say the trial is the first step toward making the U.S.
resemble
> Britain. There the government studies the cost of drugs versus
their
> effectiveness and refuses to pay for those that fail to make the
grade.
> "It's a backdoor to what the U.K. does," says Anthony Adamis, chief
> scientific officer for a unit of OSI Pharmaceuticals Inc. that
makes
> Macugen, a similar eye drug.
>
> For Genentech, the world's second-largest biotechnology company by
revenue
> after Amgen Inc., the stakes are high. Lucentis was a surprise hit
after its
> June 30 launch, logging $10 million in sales on its first day and
$371
> million in the second half of 2006. Eric Schmidt, an analyst at
Cowen & Co.,
> estimates the figure could reach $900 million this year and rise
to $1.3
> billion by 2011.
>
> Genentech has refused to provide any funding or drugs for the NIH
trial,
> scheduled to start in April. The Biotech Industry Organization
says the NIH
> should be studying cutting-edge science, not comparing two
approved drugs.
> Genentech's head of business development, Joseph McCracken,
adds: "If I were
> trying to decide how to spend NIH's money, I might not think this
is the
> best way."
>
> Leading Cause of Blindness
>
> Age-related macular degeneration is the most common cause of
vision loss in
> people over age 65 in the U.S. Between 1.2 million and 1.4 million
people
> have lost vision due to AMD, and some 7.3 million are at risk. "The
> prevalence of disease is going to increase as [life] expectancy
increases,"
> says Frederick Ferris, clinical director of the National Eye
Institute, part
> of the NIH. "This all points to an epidemic of AMD 20 years from
now."
>
> Doctors are using Lucentis and Avastin to treat "wet AMD," a type
of the
> disease in which overgrowth of blood vessels and leakage of fluid
cause
> gross swelling of the macula, a part of the retina.
>
> On a recent visit, Yevgeniya Erlikh, a 78-year-old Russian
immigrant, stared
> stoically, her eye numbed and propped open, as Dr. Fung in San
Francisco
> injected Lucentis to try to save her sight. "One, two, three,
finished,"
> said Dr. Fung. Scans showed Mrs. Erlikh's fluid-swollen retina
returning to
> normal. She now can see the big "E" on the eye chart from 20 feet
away.
>
> Avastin fights cancer by halting the growth of blood vessels that
sustain
> tumors. The FDA approved it as a cancer treatment in 2004.
>
> More than a decade ago, research suggested that taming vessel
overgrowth
> might also be used to treat diseases of the eye. But based on
early tests in
> monkeys using a similarly sized molecule, Genentech thought the
Avastin
> molecule was too big to penetrate the retina. Its scientists spent
two years
> re-engineering it to create Lucentis, which then underwent seven
years of
> testing.
>
> [Chart]Later doctors would say that Genentech was wrong to reject
Avastin
> for the retina so quickly. But after the company's painstaking
work to make
> Lucentis, it had little incentive to re-evaluate Avastin as an eye
> treatment.
>
> In July 2005, Genentech reported the results of a big Phase III
study of
> Lucentis before a hushed crowd of 2,000 at a medical meeting in
Montreal.
> The studies showed it halted blindness in 90% of people with AMD
and
> improved vision in 30%.
>
> "There was an audible gasp," recalls George Williams, chairman of
> ophthalmology at the Beaumont Eye Institute in Royal Oak, Mich.
Lucentis
> "was so much better than anything else." Previously the disease
was treated
> with less-effective drugs, photodynamic therapy and lasers --
  "like using a
> blowtorch to stop weeds," says Dr. Fung in San Francisco.
>
> The only problem: Approval would take another year.
>
> Then came an apparent solution: At the same meeting, Philip
Rosenfeld, a
> professor at the Bascom Palmer Eye Institute of the University of
Miami
> Medical School, presented a case of a patient who had been going
blind and
> was injected with Avastin. The patient's retinal scans
dramatically improved
> a week after treatment and vision began to regain sharpness over
six months.
>
> "We got to rejoice for all of 30 seconds," recalls Genentech's
Charles
> Semba, the development leader for Lucentis.
>
> Rather than wait until Lucentis was approved by the FDA, many
doctors
> grasped at the next best thing. With the help of compounding
pharmacists who
> siphoned tiny doses of Avastin into small syringes, eye doctors
tried it in
> thousands of patients. In large doses for cancer, Avastin costs
$55,000 a
> year. The dose used in the eye costs just $20 to $100.
>
> "People thought we were cowboys, but we were doing it in our
patients'
> interests," says Robert Avery, an ophthalmologist in Santa
Barbara, Calif.
> "When people are going blind, they're willing to take risks."
>
> Even after Lucentis received FDA approval last year, many doctors
stuck to
> Avastin because a comparable Lucentis injection costs
$1,950. "This is a
> public-health issue," says Dr. Rosenfeld of Miami. "I believe in
profit but
> things are out of proportion."
>
> In December, the FDA sent a warning letter to one compounding
pharmacy in
> New England, saying the practice of splitting Avastin doses
carries a risk
> of contamination and other problems. The FDA said it may seek an
injunction
> to stop that pharmacy from splitting Avastin if it doesn't fix
problems.
> L.D. King, executive director of the International Academy of
Compounding
> Pharmacists, says he considers the letter "overreaching" and part
of a
> broader crackdown on compounding pharmacists, though he knows of
no other
> FDA moves involving Avastin so far.
>
> Last month, the American Society of Retina Specialists found in a
survey
> that doctors preferred Avastin over Lucentis 76% to 9% for their
Medicare
> patients. Even when patients had supplemental insurance policies
that
> covered the patient's cost, the margin was 51% to 43%.
>
> The Mom Test
>
> Genentech argues Lucentis is the only product shown to safely
restore vision
> and Avastin remains unproven as an eye treatment. "I've seen
anecdotal
> reports. They're impressive. But they're still single-case
reports," says
> Susan Desmond-Hellmann, the company's president of product
development. She
> cites the mom test: "If my mom had [AMD], I'd want her to get the
drug that
> is safe and effective."
>
> The Issue: Genentech sells a drug for eye disease at $2,000 a
dose. Some
> doctors are using a similar but cheaper Genentech drug as a
substitute.
>
> Why It Matters: Genentech profits could take a big hit if the
practice
> spreads. If the substitute isn't safe, patients could suffer.
>
> What's Next: A federally funded trial will compare the two drugs.
>
> Retired San Francisco businessman H. William Jansen, 79, recently
took his
> fourth injection of Lucentis and minutes later confidently took
the wheel of
> his silver Jaguar. "I think we've got this thing on the run," says
his
> doctor, H. Richard McDonald, who is a consultant to Genentech but
has
> publicly questioned Lucentis's price.
>
> Others swear by Avastin. Harry Ulmer, an 80-year-old retired
mechanic on a
> fixed income in Bakersfield, Calif., says he can play gin rummy
and drive
> his 2001 Toyota thanks to the drug. "Avastin does the job and it
is priced
> right," says Mr. Ulmer, a patient of Dr. Avery in Santa Barbara.
>
> Genentech, in justifying the cost of Lucentis, says its trials of
the drug
> included more than 6,000 patients who received vision tests,
retinal scans
> and monthly doctor checkups. It was "one of the more expensive
clinical
> trials we've run," says Ronald Park, team leader for pricing. He
notes that
> older drugs for AMD cost nearly $1,000 a dose without improving
vision.
> Lucentis "is a breakthrough drug for a very bad disease," says Dr.
Park.
>
> The company also reasons that Lucentis could prevent disability,
falls,
> broken hips and depression associated with blindness. The elderly
blind
> "become more dependent on those they love to drive, get food, help
around
> the house. Until you've seen someone who was independent go blind -
- and
> I've treated these folks -- you don't understand how terrible this
can be,"
> Dr. Park says. The American Academy of Ophthalmology this month
said
> blindness costs the health-care system more than $2 billion a year
including
> nursing-home care.
>
> Finally, Genentech says it is happy to help those who can't afford
Lucentis.
> Since Lucentis's approval last summer, 15,000 patients have called
the
> company's assistance programs asking about the drug, a spokeswoman
says.
>
> The scientist who made the discovery behind both the Avastin and
Lucentis
> programs is Napoleone Ferrara. After medical school at the
University of
> Catania in Sicily, Dr. Ferrara came to the University of
California, San
> Francisco, to study how blood vessels feed tumor growth. There he
got
> interested in a growth factor for vessels.
>
> Joining Genentech in 1989, Dr. Ferrara and colleagues reported
they had
> isolated the vessel stimulant VEGF, or vascular endothelial growth
factor.
> Later they sequenced the gene for VEGF and worked on protein
molecules
> called monoclonal antibodies that block it. That led to Avastin.
>
> In addition to the monkey studies that suggested Avastin molecules
couldn't
> reach the retina, there were other reasons Genentech didn't push
the drug
> hard as an eye treatment. Avastin was designed for cancer patients
who need
> the drug to stick around in their bodies to do its work. Although
that could
> raise the risk of cardiovascular problems associated with Avastin,
it was
> worth it for cancer patients facing a terminal disease.
>
> For elderly people with eye disease, Genentech wanted a drug that
would home
> in on the retina, do its work and quickly get eliminated from the
body. The
> drug it found, Lucentis, binds 20 times better to VEGF in retinal
cells and
> is safer, Dr. Ferrara says.
>
> "This isn't Avastin Jr.," insists Dr. Semba, the Lucentis
development
> leader.
>
> But some specialists say the two drugs, despite their differences,
might be
> equally effective. Dr. Avery, who has a research appointment at the
> University of California, Santa Barbara, decided in 2005 to do the
kind of
> study Genentech had long ago lost interest in performing. He and
Israeli
> colleague Anat Loewenstein injected Avastin into rabbits' eyes. The
> conclusion, says Dr. Avery: "Hey, this does get through the
retina." They
> published the findings in the journal Retina in February 2006.
>
> Moreover, in a safety challenge to Genentech, Dr. Fung in San
Francisco
> teamed up with Dr. Rosenfeld in Miami, devising an Internet survey
to seek
> swift reports of serious side effects from Avastin.
>
> In a snapshot of more than 5,200 eye patients on Avastin, their
survey found
> four strokes including one death in a person with risk factors, an
> unsurprising rate for older people, the doctors reported in the
British
> Journal of Ophthalmology in November 2006.
>
> Lucentis itself may raise stroke risk. In late January, Genentech
sent out a
> "Dear Doctor" letter noting that patients taking the recommended
dose of
> Lucentis had a higher rate of strokes (1.2%) than patients taking
a smaller
> dose (0.3%).
>
> NIH Trial to Start
>
> With billions of dollars at stake and medical questions
unanswered, the
> National Eye Institute plans to start a two-year trial in May or
June to
> compare safety and efficacy of Avastin versus Lucentis. While the
NIH has
> previously run tests comparing newer brand-name drugs against
older and
> cheaper generics, this is the first time it is pitting two brand-
name
> biotech drugs against each other, says Dr. Ferris, the eye
institute's
> clinical director. He says the government must conduct the study
because it
> needs to ensure that the widespread use of Avastin is safe.
>
> Daniel Martin, chair of ophthalmology at Emory University School of
> Medicine, is leading the NIH trial and has selected 45 test sites
for it. He
> offers his own mom test. "If I were treating your mom, you'd want
me to know
> which drug is better," he says. "And if they're equal, why not use
the
> less-expensive one?"
>
> However, funding for the trial remains uncertain. In part because
the
> government has to purchase all of its Lucentis and Avastin
supplies, the eye
> institute says it can't afford to fund the trial on its own and is
seeking
> help from Medicare.
>
> Barry Straube, chief medical officer of the Center for Medicare
and Medicaid
> Services, says he welcomes the trial as a guide for reimbursement
policy,
> but lawyers for the agency have said it lacks legal authority to
use the
> Medicare trust fund for such research expenses. Dr. Martin says
the NIH has
> awarded $16.2 million for the trial and he'll seek additional funds
> elsewhere if needed.
>
> Officials at the center, which administers Medicare, project that
Lucentis
> could over time cost taxpayers more than $1 billion a year and
possibly as
> much as $3 billion annually. Dr. Straube says he would be pleased
if that
> figure can be reduced. "Not only are we interested in preserving
the
> Medicare trust fund, but we're sensitive to the higher co-
insurance payment
> Medicare beneficiaries would have to pay," he says.
>
> Genentech says some of the projections of the Medicare impact are
too high,
> noting analysts' estimates that this year's total sales will fall
short of
> $1 billion.
>
> For the moment, the company's data suggest Lucentis has captured
about 55%
> of the market in new cases of AMD. Doctors' surveys suggest
Avastin has
> captured much of the rest. That "unique situation," Executive Vice
President
> Ian Clark recently told analysts, "will challenge our rate of
growth of
> Lucentis in 2007."
>
> -- Disclaimer ------------------------------------
> Ce message ainsi que les eventuelles pieces jointes constituent
une correspondance privee et confidentielle a l'attention exclusive
du destinataire designe ci-dessus. Si vous n'etes pas le
destinataire du present message ou une personne susceptible de
pouvoir le lui delivrer, il vous est signifie que toute divulgation,
distribution ou copie de cette transmission est strictement
interdite. Si vous avez recu ce message par erreur, nous vous
remercions d'en informer l'expediteur par telephone ou de lui
retourner le present message, puis d'effacer immediatement ce
message de votre systeme.
> ***
> This e-mail and any attachments is a confidential correspondence
intended only for use of the individual or entity named above. If
you are not the intended recipient or the agent responsible for
delivering the message to the intended recipient, you are hereby
notified that any disclosure, distribution or copying of this
communication is strictly prohibited. If you have received this
communication in error, please notify the sender by phone or by
replying this message, and then delete this message from your system.
>

Je ne sais pas encore bien comment ca marche car j'ai eu un message
qui m'indiquait qu l'on verrait mon adresse email si je repond
directment alors j'ai esayé par la case d'à coté "commencer une
conversation"  ...

Si ca fonctionne on peut essayer le faire un mail aux personnes
inscrites à l'association  Qu'en penses tu ?? et là on peut commencer
par l'ouvrir aux suggestions de chacun afin que les gens y trouvent ce
dont ils ont besoin  C'est à partir du moment ou les personnes
commenceront a poser des questions et d'autres a y répondre et ou a
donner des temoignages que le forum prendra vie  Enfin c'est ce que je
pense  Et toi qu'en dis tu ?, et Anne ??
Amicalement