Sturge-Weber Sign Up Information

Good News On Brain Research Bills

On Monday, July 14th and Tuesday, July 15th the House of Appropriations Committee passed two bills with funding for the research of brain disorders.

LHHS: Monday, the Committee pass the Labor, Health and Human Services, Education and Related Agencies appropriations bill, including $100 million for the BRAIN Initiative. The BRAIN Initiative is intended to revolutionize the understanding of the human brain, helping researchers understand more about brain disorders and accelerate the development and applicative of innovative technologies to treat, cure and prevent brain disorders. The bill also included $2.5 billion in funding for NINDS and $2.1 billion for NIMH. Additionally, the bill included $5 billion in emergency funding to support biomedical research, including support for current grantees to cover the shutdown costs, startup costs, and costs related to delays in research in 2020 due to the COVID-19 pandemic.

CJS: Tuesday, the Committee passed the Commerce, Justice, Science and Related Agencies appropriations bill, including $8.5 billion in funding for the National Science Foundation, representing a #270 million increase over FY2020 appropriation. Of the $8.5 billion, nearly $7 billion is allocated for research and related activities - a $230 million increase.

The full House of Representatives is expected to vote on the LHHS and CJS appropriations bills within the next two weeks.

SWF Clinical Care Network Updates

There is nothing more important than having a resource you can rely on when seeking a medical center or specialist. SWF is continuously gathering information on its Clinical Care Network centers and specialists in an effort to provide you the most up to date information.

Please check out the ongoing updates being made on the CCN section for patients on our website. The latest updates are:

Boston Children''s Hospital, Boston. MA
Detroit Children''s Hospital, Detroit, MI
Dell Children''s Medical Center, Austin, TX
Mayo Clinic - Minnesota, Rochester, MN
Nationwide Children''s Hospital, Columbus, OH
Nemours DuPont Hospital for Children, Wilmington, DE
Seattle Children''s Hospital, Seattle, WA
Texas Children''s Hospital, Houston, TX
Wills Eye Hospital | Thomas Jefferson University Hospital, Philadelphia, PA

All centers are being updated, so keep coming back as we continue to increase our information and keep you more informed. As always, if you need to discuss a special situation or have questions, please contact our Community Relations Director, Julia Terrell, jterrell@sturge​-weber.org.

We''ve come a long way - check it out!

SWF FAMILY GAME NIGHTS
Family game nights are 6-7 PM Central (Eastern - 7-8 PM; Mountain - 5-6 PM; Pacific - 4-5 PM)

ONE NIGHT LEFT - IN AUGUST!
August 12th - World Scramble Night
Prizes for the biggest winner and loser!

Please register by following the link below!
Once registered, we will send you the RingCentral connection information (you will be prompted to install the RingCentral app upon connection), along with any materials you will need to play the game.

Therefore, when I was born with a Port Wine Birthmark, my birth mother probably decided to put me up for adoption in hopes that Americans would adopt me and I could get the treatment I needed for my face.

I tend to look at my birthmark in a positive way more so than a negative. Sure it can be annoying to have it at times, but I might have never been able to come to the US if I didn't have it. I have been receiving laser treatments on my face ever since I was adopted and brought to the US. Dr. Burton is my doctor at Duke Hospital in my home state, North Carolina. Over the years my Port Wine Birthmark has lightened, but still continues to cover almost the entire left side of my face.

I love surfing, swimming, spending time at the beach, dancing, singing, acting, playing soccer, cheering, skiing, gardening, cooking, hiking, playing with my two dogs, and spending time with my friends and family. Even though my Port Wine Birthmark continues to be on my face, even after years of treatment, it hasn't stopped me from being happy and doing all the things that I enjoy.

IN JULY, DID YOU KNOW . . .

National Sunglasses Day

https://www.thevisioncouncil.org/members/national-sunglasses-day

National Hydration Day 2020

https://nationaltoday.com/national-hydration-day/

1. Set Reminders
2. Tell someone to be hydrated too
3. Make Tasty infused water

https://www.mayoclinic.org/diseases-conditions/dehydration/symptoms-causes/syc-20354086

MISSION ACCOMPLISHED!

Congratulations to Molly, Thomas and Myla Speers for another successful Myla''s Mission Walk for SWS Awareness held on Saturday, July 25th. Through participation "virtually", $10,500 donations and sponsorships were provided from across the country including bidders at the online Silent Auction. The Speer''s family and volunteer''s hard work has provided funding for future research and educational programs for patients and families.

Below are just a few highlights from the event:

A total of 135 Virtual Walkers
A total of 15-20 walkers walked physically with the Speers
Silent Auction - $1919.00 received
A total of 39 sponsors! Thank you Indiana!

Thank you to the Speers, volunteers and ALL participants for making this year''s event successful. Way to Go!

Oh, What A Summer!

We cannot believe that summer has almost come and gone already. It was challenging to find things to do this summer by not traveling and continuing to keep social distance! SWF Game Nights was definitely an improvement on another evening of TV or video games.

In June, we began our "virtual game night" adventure with Bingo. Bingo cards were emailed to all participants that were printed out. Prizes for the Biggest Winner and Biggest Loser were given to the Rasmussen Family as the Biggest Winner and Karen Ball, the Biggest Loser.

In July, we had Pictionary Game Night with 30 participants! Talk about crazy and fun! For a full hour, families tried to guess words and phrases while watching pictures being drawn on a computer screen or smart phone. Yes, it was different, but doable! Maya Zidarich was the Biggest Winner and Brian Fisher was the Biggest Loser!

In August, our final Game Night, we played Word Scramble. Very much like Boggle, participants were given 2 minutes to come up with as many words possible with specific letters of the alphabet. Carola Smail was the biggest winner and Olivia and Crystal Smail tied for Biggest Loser, but they weren''t really losers since they came up with some amazing words the rest of us never thought of!

Stay tuned for more opportunities to gather together and have some fun. Plans are forming for Game Night to make a come back in January! If you have some ideas, send them to swf@sturge-webe​r.org. We love hearing from you!

Have a great back to school season, however that may look for you. Be safe and stay healthy!

Let Your Company Double or Triple Your Impact!

Many employers sponsor matching gift programs to match charitable contributions made by their employees. Gifts from employees'' spouses, retirees, even friends, may also qualify for a match. Check to see if your employer offers a matching gift program. If they do, you can automatically apply for your donation to make a bigger impact online!

QUESTIONS? Contact Maristel Aguilar, maguilar@sturge​-weber.org

The Sturge-Weber Foundation''s New Professional Task Forces

We are excited to announce the formation of Professional Task Forces within our Clinical Care Network that will lead efforts in accomplishing goals set annually. Please welcome the following leadership for each Task Force:

Transition Task Force
Carol Roethke-Greene, RN,
Nemours Hospital for Children
Ophthalmology Task Force
Dr. Lauren Blieden,
Texas Children''s Hospital
Dermatology Task Force
Dr. Esteban Fernandez,
Nationwide Children''s Hospital
Neurology Task Force
Dr. Dave Shahani
Cook''s Children''s Hospital

We thank these professionals for being an integral part of the SWF team and look forward to we can accomplish as a team!

SWF Clinical Care Network Updates

SWF continues to update its online Clinical Care Network information!

Please check out the updates made in July on the CCN section for patients on our website. The latest updates are:

The University of Utah School of Medicine, Salt Lake City, UT
Bascom Palmer Eye Institute, Miami, FL
Cincinnati Children''s Hospital Medical Center, Cincinnati, OH
Rady Children''s Hospital, San Diego, CA
University of CA - Irvine, Irvine, CA
University of CA - San Francisco, San Francisco, CA
UNC Children''s Hospital Chappell Hill, Chappell Hill, NC

All centers are being updated, so keep coming back as we continue to increase our information and keep you more informed. As always, if you need to discuss a special situation or have questions, please contact our Community Relations Director, Julia Terrell, jterrell@sturge​-weber.org.

We''ve come a long way - check it out!

We are in an unpredictable season of life, now more than ever. Not only is there the existing conditions of Sturge-Weber syndrome to handle, but now, lifestyle changes that are changing daily to combat the spread of COVID-19.

What is school going to look like?

What is work going to look like?

What do I need to have in place to protect my child and family?

So many questions. So, what''s your plan?

Join the Sturge-Weber Foundation for What''s Your Plan Conference Calls. Ask questions, share your experiences, or simply listen as we share information on ways to prepare and plan ahead.

Tuesday, August 18th, 7:00 PM (CST)
What''s Your Plan - Back To School Shopping|What Does That Look Like?

To join us - follow the link below using desktop/laptop computer or iPad/iPhone:

Join from PC, Mac, Linux, iOS or Android: CLICK HERE
For the best audio experience, please use computer audio.

SWF FACEBOOK UPDATES!

THE NEW OFFICIAL STURGE-WEBER AWARENESS PAGE!!
The Sturge Weber Foundation now has its own Awareness Page Group! It''s a public place created to share your questions, stories, pictures and videos. The SWF is always here to assist you when you need us. Any questions that are commonly asked questions will be added to our other platform swf.inspire.com so the questions can be stored for future reference. Now it is your turn to share - we hope to hear from you soon.

THE STURGE-WEBER FOUNDATION FUNDRAISING BUTTON
The Sturge-Weber Foundation Facebook page now has a fundraising button. You can now create a fundraiser from our page as well as your personal page. This will increase coverage for your fundraiser to all the SWF followers! Check it out and give it a try!

NEW SWF ONLINE STORE!

The Sturge-Weber Foundation is working hard on an all new SWF Online Store with products from t-shirts, coffee mugs, to caps or leggings! You get to pick from a variety of merchandise and logo to create your style! More details to come. Check for emails and our website for our grand opening!

AUGUST SPOTLIGHT
Daniela Fernandez, Mexico City

Hi, my name is Daniela and I am from Mexico City. I am 29 years old and when I was born, I was diagnosed with Sturge-Weber. Throughout the years it''s been difficult for me and my family because of the number of treatments needed for my condition. It has been a real struggle for me personally, maybe because of how society is in Mexico. Many people in my country bully or even despise others who look differently than themselves and believe they are better than you.

Now that I am 29 though, I want people to know the real me, who I really am. I am working hard to recover the courage, strength and confidence I lost while I was younger.

Recently I received a diagnosis that I have Klippel-Trenaunay, not Sturge-Weber syndrome, which is also a vascular malformation that causes skin tissue overgrowth, a port-wine birthmark and severe pain in the overgrowth areas. My PWB covers the left side of my body, but the overgrowth is in my right leg.

I now look at my disease in a positive way and not allow negativity to control me. Day by day, I try to unlock a "step" that has impeded me to grow as a person. Regardless of my physical situation, I am a whole person with a lot to offer!

I thank my family and true friends who have encouraged me to see life differently than before!

REGISTER FOR PeDRA VIRTUAL CONFERENCE

The Pediatric Dermatology Research Alliance (PeDRA) will be holding it''s Annual Conference virtually, October 22-23, 2020.

Registration is free to patients and families. PeDRA is working on new patient-focused activities this year, including a mini-Camp Wonder for the kids and guided poster tour for the adults. With the virtual format we also expect to improve our inclusion of patient representatives in research-focused breakout sessions.

We encourage you to register for this annual conference. It is a great opportunity to see the latest in research and treatments in pediatric dermatology, as well as connect with other patients, families and professionals.

JUNE IS MIGRAINE AWARENESS MONTH

Dr. Dave Shahani, Neurologist and Epileptologist at Cook Children''s Hospital, Fort Worth, TX, provides some important information on what to watch for with SWS migraines.

"Migraines in SWS can be quite painful and are not typical migraines, but rather migraine-like headaches that can be associated with a progression of symptoms."

Things to watch for include:

1. Depending on the location of loeptomeningeal angioma, watch for transient one-sided weakness, a transient visual change or
preference to one side, transient confusion, or any sudden onset of neurologic symptoms.

2. Poor sleep

3. Dehydration (very critical during the summer)

4. Light or sound sensitivity

5. Unilateral throbbing of pain

The American Headache Society and the American Migraine Foundation can provide a good basic education on the causes and the most recent advances in treatment and therapy. Their websites are reliable and reader-friendly.

Always remember to consult your neurologist, who knows your specific situation better than any website you find, for what would be the appropriate course of action.

Another resource we have mentioned frequently is the magazine Brain and Life, a publication of the American Academy of Neurology that you often see in doctor's waiting rooms. It is a print publication that can be sent free to any individual requesting it. It is also available on-line.

Each month has articles explaining and enlarging on different neuro syndromes and disorders in non-technical language with additional material that provides specifics . The articles also give many real-life examples of people living with these, including articles on various aspects of seizure disorders.

Each issue highlights a well-known personality - TV, movies, music, sports - people you may have thought were talented and privileged and beyond reach of medical problems. Then you find out that they have, or care for someone who has, a neuro condition.

Go to BrainandLife.org for more information and to sign up for a subscription.

CHILD VISION AWARENESS MONTH

June is also Child Vision Awareness month. If you search "Child Vision Awareness" on-line you will find many links to valuable information. One of the main reasons to have an exam for a baby or young child is that children with vision deficits and problems do not know they are experiencing them and cannot express it.

Our SWF consultant Dr. Alex Levin has shared with us some important things to keep in mind especially for children with SWS.

1. Children should have their vision/eyes screened by their pediatrician at every well child visit
   
   
2. Pay attention to your child's eyes: holding things too close, complaints about vision, or eyes that look different than normal should prompt a visit to the eye doctor
   
   
3. Early signs of glaucoma in the first few years of life include bigger eyes, cloudy eyes, sensitivity to light and tearing
   
   
4. Even if the eyes look normal, children with Sturge-Weber need regular eye examinations to screen for glaucoma
   
   
5. If drops are prescribed for glaucoma make sure you follow the instructions of the doctor and report any concerns or deviations from the prescribed regimen

Alex V. Levin, MD, MHSc, FRCSC
Chief, Pediatric Ophthalmology and Ocular Genetics
Robison D. Harley, MD Endowed Chair in Pediatric Ophthalmology and Ocular Genetics
Wills Eye Hospital Philadelphia

MAJOR MILESTONE!

Jean Schneider of New York has been an active member and supporter of the Sturge-Weber Foundation since 2011, often encouraging her family and friends to become donors. This is a letter she recently sent to her "Dear Friends" email list, which brought successful results. She has asked us to share this letter with our membership. It can be adapted by anyone to suit your circumstances. You will be able to personalize the information any way you want. The sentiment and encouraging fundraising message can benefit us all.

Dear Friends,

It is very hard for me to believe, but in a few days I am having a milestone Birthday. At this stage of life, I am focused on doing something significant to help others, and so, rather than receiving cards, flowers, balloons, cake, etc., I would like to use this occasion to raise money for the Sturge-Weber Foundation.

As many of you know, my granddaughter was born with a rare disorder called Sturge-Weber syndrome. She required immediate care. This condition is so rare that she needed to come to New York when she was six weeks old for more procedures and treatment.

When I returned home after having been away for her birth, the Sturge Weber Foundation "saved me". It provided the support of caring souls to listen to my fears and tears, to provide information about the disorder and resources. They provided a chance to contact other mothers and grandmothers whose children were living with this disorder. Talking to others gave me perspective and increased my fund of knowledge as I also did my own research in the medical journals.

The Sturge Weber Foundation provides social media and group emails for questions, comments, as well as sharing experiences and suggestions about what to do when your child is hospitalized. You get ideas on how to handle the problems that arise with children with this syndrome.

The medical profession is generally not experienced or savvy in dealing with the complex symptomatology youngsters with Sturge-Weber present. The Foundation helps support basic research in search of a cause of Sturge-Weber and develop treatments for this life long, rare syndrome. As I have received help and support, I have also helped many other parents and grandparents as they confront the challenges of having a child with this syndrome.

Beginning in 2011, I provided ongoing support, housing and care for a 6-week-old baby boy from Costa Rica as he needed treatment on a monthly basis in New York. I had met his mother in the waiting room of a dermatologist's office. He and my granddaughter have the same syndrome. He is now 9 years old and considers me his "American grandmother."

It would be very meaningful to me if you would honor my birthday by making a donation to the Sturge Weber Foundation. The Foundation has helped me so much and I continually want to help them help others. Any amount you would like to send is very much appreciated.

Contact www.sturge-weber.org to make a donation online or you can phone 973-895-4445 Thank you and may we all stay safe and healthy.

CONGRATULATIONS!
Makayla Vaquilar has graduated from
8th grade this year!
Our hope is that High School will be full of more opportunities and success!
Way to go!

SENIOR 2020!
Congratulations to Jeremy Huston,
2020 Senior graduate!
We are so proud of you! May your future dreams all come true!

Kaylee, You Are Amazing!

Congratulations Kaylee, for graduating from the 6th grade in 2020! May your future in middle school be amazing as you are!

PLEASE WELCOME DEBBIE LONERGAN!
Join us in welcoming Debbie Lonergan to the SWF staff! Debbie fills the position of Office Manager. She has worked with the Foundation before while the home office was located in New Jersey. She will be organizing staff projects and tasks to meet everyday deadlines along with other administrative duties. Debbie has her own business as a "Virtual Assistant" and has worked in many different industries over the last eighteen years in positions varying from sales assistant to office and HR manager. The industries she worked in were varied, and each added unique skills to her repertoire of experience.

"I have enjoyed learning through my various opportunities and every one offered me new opportunities to sharpen my already strong organization and time management skills; further develop an attention to detail that I come by naturally, and put into practice my ability to multi-task and meet deadlines."

We welcome you Debbie and are so glad you are a part of the SWF team!

SWF FAMILY SUMMER GAME NIGHTS

Family game nights are 6-7 PM Central (Eastern - 7-8 PM; Mountain - 5-6 PM; Pacific - 4-5 PM)

Prizes for the biggest winner and biggest loser!

July 15th - Pictionary Night
August 12th - World Scramble Night

Please register for the game nights you wish to attend using the form below. Once registered, we will send you the RingCentral connection information (you will be prompted to install the RingCentral app upon connection), along with any materials you will need to play the game.

SEND US YOUR "DAD" JOKES!
THE GOOD AND BAD

In honor of Father''s Day, SWF is compiling a montage of father''s and their "Dad" jokes. Please send photos or videos with your dad telling his favorite jokes!

Submit jokes to swf@sturge-weber.org by Thursday, June 18th!!

Questions? Contact sfinnell@sturge-weber.org.

THE RESULTS ARE IN!

Over 1,574 miles recorded.
$1,060.00 donated.
Thank you for your support!

Don''t Look Back!  Together, Let''s Look Forward!

What seems to have been the longest year ever, is quickly drawing to a close.  Although we have been separated physically from friends and family, 2020 has given us the opportunity to slow down and evaluate what is really important in our lives. 

We know what is important to us, that''s people like you.  Without one another, community would not exist, friendships would not be cultivated and opportunities would be missed.

In the midst of all the chaos, we are still here for you.  We could not have done it without you though. Our thanks to you is immeasurable. You have allowed the SWF to continue to function in this difficult year through your generous support.  Research is still being done and support is still being provided for newly diagnosed patients and families.

As 2020 fades back in the distance and 2021 comes into view, keep looking forward, don''t look back.  2021 may be just as challenging, however, TOGETHER, we are STRONGER THAN THE STRUGGLE!

Wishing you a HAPPY NEW YEAR!

The Sturge-Weber Foundation Board of Directors and Staff

SAVE THESE DATES!

SWF Education Day Conference 
February 6, 2021

SWF Clinical Care Network Meeting
February 25-27, 2021

SWF International Research Network Meeting
Fall 2021

SWF Family Game Nights!
New games and dates to be announced soon!

Details on events will be coming soon!