Newsletter

May 2005

SWS Individuals Take Charge
New SWSC Support and Website Features

The SWSC is proud to announce the new SWSC Individuals Group. The group started informally as an email support group through Yahoo Groups in May of 2003. On April 1, 2005, the support group officially became a private group exclusively for individuals with Sturge-Weber syndrome.

In addition to the email support group, the SWSC Individuals Group has a home on the SWSC website, making it the first-ever members only website based group for individuals with SWS. Individuals with SWS can register for the group online, where members have their own web page to share pictures and experiences with other members.

The group is founded, moderated, and managed by those with SWS – another first. Group founders are Paul Siegel, Michelle Mora, and Brenda Villa, all adults living with SWS.

Paul Siegel, Chairman, lives in Maryland and is presently attending college; Michelle Mora works for the Epilepsy Foundation in her home state of Louisiana; and Brenda Villa is also the Ambassador Volunteer for SWSC and resides in Arizona.

The group has many plans for the future. If you have SWS and would like to be a part of the group, please visit the website for details or contact the SWSC Individuals Group at . SWS individuals can join the email support group by registering at Yahoo Groups (http://health.groups.yahoo.com/group/swctalkcommunity/).

How the SWSC Individuals Group Works - Website

Go to the SWSC Home Page, and click on the “Group Login” link. This takes you to the SWSCIG Login/Registration page. You will need to register and receive your ID/Password confirmation before you can access the group.

Once you are a registered member, you will have your own member’s page with your picture and mini-bio, which includes an individual Blog, enabling you to add and update your own content. Other members will be able to add their own comments to your Blog, giving the SWSCIG a true Community feel.

Yahoo and MSN Support Groups Now Members Only

On April 1, 2005, the SWC Talk Community Individuals Group became a Members Only group for individuals with SWS. SWSCIG volunteers Paul Siegel, Michelle Mora and Brenda Villa moderate the group. If you have SWS and would like to join the group, apply to join here: http://health.groups.yahoo.com/group/swctalkcommunity/

The Sturge-Weber Syndrome Community Support group on MSN Groups has changed from a Public Group to a Private Group. Making the group private will help cut down on “spamming” and email harvesting. Everyone is welcomed to join this group – parents, family members, friends, individuals with SWS, and those who simply want to learn more about SWS and its related symptoms. The group also hosts regular Chat Night sessions. Jinny Wylie, SWSC Patient Advocate, and Elena Mendez, SWSC New Parent Services, manage the group. Apply to join the SWSC Support Group on MSN Groups here:
http://groups.msn.com/Sturge-WeberSyndromeCommunitySupport/

Also New on the SWSC Website – Ask the Nurse

Another new addition to the SWSC website is our “Ask the Nurse” feature. Parents and adults seeking more information on a variety of topics can ask our resident registered nurse. While using this feature, please keep in mind that you should always follow your doctor’s instructions and advice. This feature is not intended as a means of diagnosis for yourself or your child, but only offers advice and information on treatments for SWS and related symptoms.

Different Stages of Social Issues
By Hank Bartenbach

Hi everybody,

I know a few parents were talking about wanting to learn more about the social issues that your children might run in to, as they get older.

There are different stages of social issues in my opinion.

First Stage:
In the years before a child starts school they are still developing in the mind, and might have a few friends that are friends of the family most likely, or kids in the neighborhood. If these friends are in the same age group and going to be in the same school/grade they can be a factor in how your child makes friends in school. I suggest a lot of get-togethers (with the parents), birthday parties, etc, etc. You want to have the other children to not feel uneasy around your child (accept them for who they are).

Second Stage:
Elementary School will be very hard for your child. I had many days coming home crying because kids are very mean. Have sleepovers, birthday parties, and continue the get-togethers. I had ADHD/ADD when I was in this stage and I felt stupid sometimes because I was in Special ED thru High School.

Third Stage:
Middle School will be a little better since the kids will be starting to mature and go into puberty. Dating issues will start to come up, but that is a different topic. I suggest trying to encourage your child to participate in school activities. (like band, sports, art, etc.). What he/she is interested in.

This will be the stage where, if your child feels like an outsider, he/she will start getting into trouble for attention.

Fourth Stage:
High School and the beginning of adulthood.
This is the stage when your child will know his/her place. I was kind of lonely in High School. No relationships or dating. I had a lot of friends, guys and girls, but that was it.
By this time not very many people made jokes about my PWS. Teenagers are “teenagers” at this point.

Depending on the condition your child has, determines whether they are safe to live on their own. Some with SWS are not because of seizure activity, and will live with their parents for their life. Most of the children will be on their own after school, as long as they have a goal in sight. Do not let your child think that just because they have a VB, that they cannot live out their dreams!!!!

If people say you can't do it, tell your child to prove them wrong. It will fuel them to succeed.

VBF NEWS AND EVENTS
JOIN VBF’S 2ND ANNUAL DAY OF AWARENESS CAMPAIGN
TELL YOUR OWN PERSONAL BIRTHMARK RELATED STORY AND HELP RAISE AWARENESS AND DESPERATELY NEEDED FUNDS!

VBF is proud to announce our Second Annual VBF Day of Awareness – May 15, 2005. Last year over 50 families from all over the United States and Canada helped to raise awareness about vascular birthmarks by telling their own personal birthmark related story, and many also helped us to raise desperately needed funds by having a mini fund raiser. Click here to get registration information and details about how to tell your story and the types of fundraisers you can do.

INTRODUCING THE VBF “WE CARE BEAR”
To coincide with our Day of Awareness, May 15th, we will be giving away these adorable bears for a $20 donation to VBF ($20 for each bear). Our goal is to have YOU order 10 bears and sell them in YOUR community. If you order 10 bears, shipping or handling is free. If you order between 1 - 9 bears, there will be a shipping charge of $5.00 per order.

There will be an ear tag on our little “Birthmark Buddy” that will tell everyone about VBF and will also promote our Day of Awareness. Our logo is embroidered on the little bear’s belly, along with the words “Birthmark Buddy” and VBF is embroidered on his foot. These bears are 9 inches high (a little bigger than a beanie bear) and are soft and cuddly. The bears are white with dark blue and green embroidery and ribbon.
Please help us raise awareness and desperately needed funds. Give a Birthmark Buddy to anyone who has ever had a birthmark or to a loved one of someone with a birthmark, or just as a gift to anyone who likes cute cuddly bears. They would make a great gift for anyone treating patients with a birthmark to give them as a gift and as an effort to help VBF spread the news and raise awareness about birthmarks. Talk to your doctor and ask him/her to buy 10 bears to hand out to patients.

We need to sell 500 bears by June 30th. Please help. Download the order form.

2005 Port Wine Stain Conference – Bringing Hope to Families Affected By A Port Wine Stain

VBF is very excited to announce that our 3rd Port Wine Stain Conference will be held in Irvine, California on Friday, October 7th and Saturday October 8th.

Dr. Stuart Nelson, along with the Beckman Laser Institute will co-sponsor this year’s conference. The theme is “Port Wine Stains – Past, Present and Hope for the Future.”

This conference will be unlike any other conference because the first 50 families that register will have all meals and lodging that are associated with the conference covered. In addition, the conference fee is only $50 per family and the clinic fee is only $50 per family. Anyone who cannot pay the clinic or conference fee can request that the fees be waived. Only a $25 deposit is required for each family registering for the conference. This deposit is non-refundable.

Dr. Nelson will deliver the keynote address and other speakers include Dr. Milton Waner, Dr. Martin Mihm and Dr. Ann Comi. Dr. Waner will present on surgical needs, Dr. Mihm will present on new research and Dr. Comi will present on Sturge-Weber Syndrome. There will be two teams for the clinic. Dr. Waner will be the surgeon on Team A and Dr. Marcelo Hochman will be the surgeon on Team B. Other speakers and team members will be announced as they are confirmed.

The tentative agenda for the weekend includes:
Friday, October 7, 2005
Early registration: 5:30-7:00pm – Sutton Place Hotel
7:15 – Opening Remarks – Linda Shannon and Mike Steffano
7:30-8:00 – Keynote Address – Dr. Stuart Nelson
8:00-9:00pm – Families mingle
Saturday, October 8, 2005
Early registration and Daycare registrations: 8:00am-8:30am
(Note: Daycare services will be provided by the Beckman Laser Institute at no charge to the families)
8:30 – 12:30 – Conference – Agenda to be published at a later date, when it is confirmed.
12:30-1:00 – Lunch provided
1:00-6:00pm – Clinic appointments at the Beckman Laser Institute (note: each family will be given a 10-15 minute clinic appointment with a team of birthmark specialists. Bring films, medical reports and photos to the appointment.
7:30-9:30pm – Conference Family Dinner – Sutton Place Hotel
10:00pm – Conference ends.

Dr. Nelson’s staff is currently working on welcome packages, which will include discount tickets to local theme parks and fun events.

Please download the registration form and send it in with your $25 registration fee as soon as possible. Registrations will not be taken over the phone unless you are using a credit card to register.

For more information, or to register by phone, contact Paige Salvador, VBF Executive Director, at 856-234-2126. You can email your questions to Paige at BASPASTS@cs.com.

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Always seek the advice of a physician or other medical professional for diagnosis and treatment. The SWSC and/or VBF are not responsible for the content or accuracy of any information, advice or links on the site.

The SWSC is a branch of the Vascular Birthmarks Foundation. VBF is a fully approved not-for-profit. Your donations are tax deductible.
Federal Tax ID 16-1515227