Newsroom

If you want to be in the know about what’s going on at our organization, you’ve come to the right place.

Be sure to check back regularly to get our latest news updates.

The Sturge-Weber Foundation (SWF) announces the addition of Thuy L. Phung, MD, PhD as Director of Pathology Strategies (DPS). This appointment fulfills one of SWF’s goals to advance research of Sturge-Weber syndrome (SWS). The primary goal is to establish a tissue bank in which patient tissues are collected and stored for research. SWS patients have the authority to help steer the course of research by participating in this collective effort. Dr. Phung will be the lead in all pathology collection, storage and tissue requests for research. “We are excited to have Dr. Phung accept this new position. This will fortify our efforts to ensure the SWF global team of diverse researchers will create lasting impact”, stated Karen Ball, SWF Founder and CEO. SWF Chief Scientific Officer, Dr. Jonathan Pevsner, Ph.D. stated, “We are delights to welcome Dr. Phung to this new role in the Sturge-Weber Foundation. She brings passion, excellence and a broad range of expertise that will help us make progress toward solving Sturge-Weber syndrome.”

For those of us who are able to give more, this is the perfect opportunity to get involved in the community and help spread the holiday cheer this season.

If you want to join in and celebrate National Write a Friend Month during this wonderful winter season, here are a couple writing ideas to get you started.

If you want to live a more altruistic lifestyle, help give back in the upcoming season by checking out these volunteering ideas for cold weather months.

Thanksgiving marks an important season for all of us to take a moment and remember the little things in life—and every little thing we’re thankful for.

If you have a student in your life who you want to serve the community, here are some tips for how to encourage teenagers to volunteer with a cause they care about.

Caregiving is a valuable position in our community which often goes unrecognized. Let's look at what National Family Caregivers Month is and how you can celebrate it.

If you strive to live an altruistic lifestyle, there are lots of ways to help out this Halloween. Here are some top tricks to make Halloween a treat for everyone.

How many times did I sing that lil' dittie to my kids and to my class when I was teaching!! Never truer words have been spoken or sung though. It’s just common courtesy to say please and thank you to whoever has provided you a service or been an inspiration. Good manners have to be modeled at a young age to leave a lasting imprint that we can pass onto the next generation.

October is Anti Bullying Month. Sadly, we in the SWS and Birthmarks community know all to well about bullying and the impact it has on our lives and of those we love.

How can you get involved? If you want to join the fight against breast cancer, we have some ideas for how you can support Breast Cancer Awareness Month.

If you want to live a more altruistic lifestyle, take advantage of the season of fall to dive into getting involved. Here are five fun ways to give back this fall.

Two hundred thirty-one years later, the Constitution is still an active document for our country. So, how can you celebrate and honor this historic day?

The SWF welcomes Curt Stanton to the Board of Directors

When it comes to giving back, Labor Day is the perfect chance to do something valuable for others. Here are some ideas for how you can get involved this Labor Day.

As a teacher, one of my favorite books was and is “The Little Engine That Could”. The excitement of will the train make it and cheering him on still resonates with me. Seek out inspiration anywhere you can find it!

Whether they’re your closest family or a complete stranger, there are lots of simple ways to bring joy to others every single day. So, we came up with 10.

I just LOVE the Fall season and all the harvest has to offer to nourish my body and soul. I’ve endured the dog days of summer knowing my season will soon be upon me. I believe each of us is born ready to learn, to celebrate and to endure.

If you live an altruistic life and donate to an organization or cause you care about, you might be surprised to find these life benefits from financial donating.

If you want to take advantage of the last summer days and commemorate Family Fun Month with your loved ones, here are four ideas to celebrate this August.

Whether you make friends with your next door neighbor, community member or someone who lives halfway across the world, you can celebrate International Day of Friendship. Here’s how.

When you have an efficient morning routine, you set an effective tone for the rest of the day. Here are five ways to establish a productive morning routine.

There’s more to Global Hug Your Kids Day than just giving your kiddos a hug or two. If you want to celebrate today, here are some fun ideas to get you started.

Setting goals is simple. We’ve all heard different phrases, acronyms and ways to properly set a goal for life. However, accomplishing goals can be a whole different task.

After over 30 years of dealing with Kaelin’s challenges, I can take the wait and see approach as opposed to hold my breath and be ever ready to run! That attitude doesn’t mean we don’t have a plan and aren’t prepared for all the “What ifs” that are surely ahead. It means like the wild fire season in Colorado you learn to accept the things that are out of your control. You learn to savor every beautiful sunrise and sunset when your kids are giggling or trying to catch fireflies. You learn…this too shall pass.

If you’re considering volunteering with a cause you care about in the community, consider the benefits you can receive. Here are the top eight benefits of volunteering.

The goal of this Fellowship is to support patient-oriented research, basic science research, or translational studies relevant to Sturge-Weber syndrome or related conditions.

If you try to live altruistically, then combating your own loneliness can play a vital role in how you serve others. Here’s how to overcome loneliness in everyday life.

Mentoring a child helps them to see unlimited possibilities for the future, learn something new and most importantly, realize that somebody cares about them.

While it might seem simple to say talents can help others, actually identifying your talents and putting them to good use can be a little bit more difficult.

In the wake of recent events in the media with scandals, shootings and discord leading the headlines, it occurred to me that at the heart of it all is family, values and communication. Lead by example. Talk over the dinner table each night, restore or heal broken families, promote integrity and personal responsibility, bring up intolerance and what that looks like and so much more!

Stephen Peltier, a support of the Sturge-Weber Foundation, has accepted the position of Treasurer on the Sturge-Weber Foundation's Board of Directors.

It’s true: with a lack of Vitamin D and little time spent outdoors, the winter months can literally make you sad.

Luckily, maintaining a habit is doable when set up for success. If you want to be start (and keep) a healthy new habit this year, check out these useful tips.

New year’s resolutions are a great way to focus your year on things other than yourself—to focus on living a more altruistic lifestyle and giving back to others.

As we dive into the season of giving this month, let’s explore how the very action of giving can lead to a more altruistic life, improve our mood and even makes us happy.

With Thanksgiving behind us and the winter holidays coming up, how can you make others feel warm during the cold season? We have some ideas to get you started.

Gratitude is about more than taking a second to say “Thanks.” Gratitude shows true appreciation. This Thanksgiving, we have some ideas for how you can give gratitude.

How can you spread the cheer by giving back? We have five altruistic ideas for the holiday season that just might do the trick.

When a friend or family member gets sick, it’s difficult to see them lay in bed stifling their sniffles and running a fever. What can you do to make them feel better?

Focusing on positive thoughts can actually impact your overall health. How, you ask? Today we dive in and see how positive thoughts can make you healthier.

An Invitation to Our Steadfast Senior Members

We would like some ideas from our senior members, people with SWS who have been living with SWS,KT and PWB and who have amassed a wealth of knowledge and experience and would like to share it.

We want to develop guidelines for upcoming generations. Will you let us know the medical concerns you face now, or have learned to deal with. Right now you only have to let me know that you are interested in being a "senior resource" for future publications either print and on the website. A simple example would be "when did you find that your blood pressure needed better control" or "how did your skin change in your 40's"

Parents of adults with SWS can also give us pointers based on their experience and would provide valuable information. Many aspects of maturing may have no connection to SWS, but some may. Let's get the list on the table.

Of course we will also seek input from physicians and will seek their guidance. But we want to hear from the people on the front lines. You can just email me and let me know that you are interested in joining our "Growing Golden with SWS" project. I don't want to limit it by age. You know what you have lived with.

Think of it this way - can you say "If I had known I would have xxxxx now, I would have taken care of xxxxx sooner". Contact Anne Howard, ahoward@sturge-weber.org.

For individuals and their families, the words “You need a new organ” are earth-shattering. Luckily, we can make a difference. Check out five reasons for you to become an organ donor.

When things are busy, wellness often takes a backseat to other priorities. Luckily, today we thought of a couple ways to bring it back to the forefront of your life.

While every individual is unique and has their own preferences, there are some general guidelines to follow when interacting comfortably and respectfully with people with disabilities.