These are some of the many ways our VBF Family is coming together to raise awareness around the world for our VBF Awareness Movement this year.

How will you raise awareness this year?

• > Browse ideas at www.birthmark.org/awareness/

• > Contact us at info@birthmark.org to connect

VBF Anti-Bullying Pledge

Over 1,050 people have signed the VBF Anti-Bullying Pledge. Take 1 minute to stand with us against bullying. Sign the pledge today.

Alabama

• Amanda Leger wins Buddy Booby’s Birthmark FREE book give away and sends adorable photo of a Read Along with her daughter and husband.

Arizona

• Maria Torres- Salo creates Facebook Fundraiser for VBF’s Month of Awareness.

California

• Linda hosts a Facebook Live session with VBF Expert Dr. Stuart Nelson on the topic of To Treat or Not to Treat on May 21, 2018.
• Laura and Devin Fischer host classroom awareness event at St. Paul’s Early Childhood Development Center in Orange, CA to honor their son Caleb with a Buddy Booby’s Birthmark read along, goodie bags with informational materials, and bracelets for all the children.
• Dr. Linda hosts a Facebook Live session with VBF Expert Dr. Stuart Nelson on the topic of To Treat or Not to Treat on January 11, 2018.
• Ben and Alison Maddox created and shared a Give2myVBF page for their son Carson to celebrate his 6th birthday.

Colorado

• Kelly & Trent Bossley celebrate Day of Awareness by reading “Buddy Booby’s Birthmark” and handing out VBF stickers to their son Nolan and daughter Lydia’s preschool class in honor of Lydia who has a PWS.
• Kelly Bossley shares a Buddy Booby’s Birthmark Read-Along photo at her daughter’s preschool.
• Michelle Lukaschewski with the Purple Polka Dot Team registers #TeamVBF for the Colfax Marathon in Denver, Colorado on May 19-20, 2018.

Connnecticut

• VBF Board member Sharon Israel hosts Park Lane Jewelry fundraiser for VBF’s Month of Awareness in honor of her daughter Olivia who VBF helped network into treatment.
• Eric Pixley spills his heart out in viral facebook video thanking his parents for supporing his journey living with a port wine stain birthmark.
• VBF’s Global Ambassador, Eric Pixley, raps about his birthmark, encouraging others to #PutOnYourBirthmark on May 15 for VBF’s Day of Awareness.

Florida

• VBF Physician Expert Dr. Ana Duarte and her team lead 200 people to Rock the Hearts at the Children’s Skin Center at the Nicklaus Children’s Hospital.
• Dr. Linda hosts a Facebook Live session with VBF Expert Dr. Ana Duarte on the topic of Treating PWS and Hemangiomas in Infancy with Laser and Drug Therapies on May 4, 2018.
• VBF Board Member Sarah Kenis asks for donations to VBF through Sarah’s Facebook Fundraiser for VBF.
• Dr. Linda represents VBF at the Vascular Birthmarks Meeting: Trends & Innovations – at Nicklaus Children’s Hospital in Miami, Florida.
• Dr. Ana Duarte shares Dr. Duarte’s Vascular Birthmark Tip of the Week on why early intervention is key.

Illinois

• The Sheehan Family is hosting a Bravelets (Be Brave bracelets) online fundraiser in honor of their daughter Reagan. Purchase today and Bravelets will donate 25% to VBF in Reagan’s honor.
• Lauren Sheehan hosts a Facebook Fundraiser for VBF in honor of her daughter Reagan.

Kentucky

• Renee Andre Walters hosts Birthday Facebook Fundraiser for VBF.

Maine

• VBF Board Member Jeff Bergen partners with teachers in Maine to sponsor a 1st grade classroom awareness campaign in honor of a little girl with KTS, donating informational materials, stickers, bracelets, and 80 Buddy Booby’s Birthmark books for each child in the class.

Michigan

• Jody Lee and the Purple Polka Dot Race Team SOLD OUT the AR Workshop, where three people shared their birthmark stories while their group of 40 worked on projects, all while raising $628 for VBF through the AR Workshop’s gift and a raffle.
• Save the date for the Lee Family’s 3rd Annual Purple Polka Dot Walk/Run on August 12, 2018 in Stony Creek Eastwood Beach
• The Lee Family & Purple Polka Dot Team hosts 23 people at Yoga & Brunch on May 19 in Michigan and donates $761 to VBF’s mission.

Minnesota

• Aubrey Meister wins a FREE Buddy Booby Book on Facebook during our March Madness: Mad About Buddy Booby Campaign, and gets her state on the map.

New Jersey

• Crowned Mystic Mermaid of central New Jersey, Allison raises awareness for VBF through a Buddy Booby live read-along on Facebook.

New York

• Dr. Linda hosts a Facebook Live session with VBF Expert Dr. Roy Geronemus and VBF Global Ambassador Scott Cupples on the topic Importance of Early Treatment of Vascular Birthmarks on March 16, 2018
• Dr. Linda hosts a Facebook Live session with VBF Expert Dr. Milton Waner on the topic Treating Hemangiomas and Vascular Malformations on February 27, 2018.
• Dr. Linda hosts a Facebook Live session with VBF Psychosocial Expert: Leslie Graff on the topic Psychosocial impact of a vascular birthmark on January 25, 2018.
• Save the date for the Catalanotto Foundation’s 8th Annual Golf Outing on August 6th 2018 at the Old Westbury Country Club.
• VBF Physician Expert Dr. Gregory Levitin shares adorable photo reading the Buddy Booby’s Birthmark Book to his daughter Cora.
• Linda’s Sponsor a Family Facebook Fundraiser reaches its goal of raising $1,500 to sponsor three families to attend the NYC Conference.

Oklahoma

• Mother and daughter team Cindy & Bailie Heston set to deliver informational materials to 18 local physicians, as they raise awareness in the Oklahoma area.

Pennsylvania

• VBF Board Member Andria Gottsabend shares her family’s story through the Sisters with Birthmarks Give2MyVBF page to honor her two daughters, Olivia and Jessica, born 10 years apart, and both with beautiful birthmarks.
• Andria Gottasbend, VBF Board Member, created a Give2myVBF page to share.
• Mother & daughter team Carla Mannix and Jaysa ask for donations to VBF through Birthday Bracelets for Jaysa on Facebook, and their Birthday Bracelets for Jaysa Give2MyVBF Page.
• Ava shares the story of how she overcame her PHACE Syndrome diagnosis to become an accomplished varsity cross country athlete, scholar and advocate for those with vascular birthmarks through her Birthmarks are Beautiful Give2MyVBF Page to benefit VBF’s research mission.

South Carolina

• 2017 VBF Catalanotto Perseverance Scholarship Award Recipient Harrison Wile pays it forward with a college informational booth and bake sale fundraiser for VBF at Clemson University in South Carolina.

Tennessee

• Alice Cooper Rocks her Hemangioma, Let’s Roll in the Donations for Research and help her reach her 10,000 goal with her Give2MYVBF Page.

Texas

• Kelsey Quinn and her family rock their own custom designed VBF- Hope T-Shirts for our Day of Awareness.
• Valerie Boudreau asked for donations to VBF for her birthday through Valarie’s Facebook fundraiser for VBF.

• Dr. Linda, VBF Board Chair Sherry Parrish and the VBF on the Move Team meet with three birthmark families in Texas.

Washington

• Mother wins first-ever Buddy Booby March Madness Give Away on Facebook and gets Washington State on the map.

Czech Republic

• Lenka Gotart shares photos for May 15 Day of Awareness.

Lebanon

• Assi Family shares their story and photos.

Mexico

• Gabriella Castellanos continues the #Biking4Alonso tradition in honor of her son with a PWS with two ride-along events at spin studios on May 5 in Polanco and May 17 in Arcos Bosques, and a Give2MyVBF page so that people all over the world can ride along virtually. Gaby also hosts a Facebook Live make-up tutorial to promote #PutOnYourBirthmark day.

United Kingdom

• Dawn McKay of the UK raises awareness with an informational event at her daughter’s school.

India

• Batool Kausha and Brig. R.K.Kaushal, a veteran from the Indian Army, distribute 100 VBF brochures and work with a panel of 12 doctors at a Vascular Birthmarks Awareness program in a medical camp in Bhopal city, capital of the state of Madhya Pradesh in Central India.

Virtual

• Over 50 people share photos and stories of how VBF has helped them or a loved one.
• Thousands of people across the world join our #PutOnYourBirthmark campaign for the May 15 VBF Day of Awareness.
• VBF Ambassador Eric Pixley and family join our #PutOnYourBirthmark challenge.
• Aisling McLaughlin in Belfast invites everyone to add to a birthmark word cloud onhttps://answergarden.ch/694826
• Crystal Hodges posts 31 Drawings of Awareness on her Facebook pagefor kids who show their favorite cartoon or superhero with a port wine stain. Very cute!
• Ann Snipes asked for donations to VBF for her birthday through a Facebook Birthday Fundraiser for Vascular Birthmarks that runs through February.
• Sandra Analy asked for donations to VBF for her birthday through Sandra Analy’s Birthday Facebook Fundraiser for VBF.
• Ginny Ruger Paterno creates a Facebook fundraiser for VBF for her birthday.
• Erin Eskildsen launches a Birthday Fundraiser on Facebook for VBF.
• Heather Funk to host second Rock the Dots LuLaRoe Fundraiser for VBF, starting on the VBF Day of Awareness on May 15.
• Amanda Leutenberg with EverGreyDesigns to host a t-shirt fundraiser for VBF of her custom designed Acceptance through Education VBF shirts for the VBF Month of Awareness in May.
• Nalini Shankar hosts Birthday Facebook Fundraiser for VBF.
• Dr. Linda to host AAP Webinar on Early Intervention in May.
• Dr. Linda partners with six VBF Expert Physicians to offer a half-day of free consultations as part of the VBF Vascular Birthmarks Month of Awareness in May.
• At least 35 followers share their #PutOnYourBirthmark via Facebook Frames with Dr. Linda
• Linda hosts Sponsor a Family Facebook fundraiser to raise funds to sponsor families to attend the VBF New York Conference
• Ava and Bella, two young girls from the same town who just so happen to both have a PWS, create a Give2MyVBF Page: Bold & Beautiful Birthmarks: Ava & Bella’s Story
• Daniela’s family continues the birthday tradition in her honor with a Birthday Fundraiser for Daniela

March Madness: Mad About Buddy Booby’s Birthmark

• During our March Madness tournament, VBF shared Buddy Booby’s Birthmark, the story of VBF’s official mascot with a port wine stain, with families in the following states: AL, AZ, CO, DE, KY, MN, MO, NY, NK, PA, TN, TX, and WA, and even two countries: Canada and Australia! You can still get your state on the map today.

Purple Polka Dot

North Texas Birthmark Bash5K Race in Michigan

Check back as we add more events

Worldwide
– Put On Your Birthmark Campaign #askaccept #VBFawareness #birthmark #PutOnYourBirthmark
– Share Your Birthmark Story with VBF
– Support a Give2myVBF personalized fundraiser page
– May 2 Published article in AAP News, co-authored by Dr. Linda Rozell-Shannon with Dr. McInerny and Dr. Cohen
– May 15 #PutOnYourBirthmark Day of Awareness video by Dr. Linda Rozell-Shanon
– May 17 Webinar for pediatricians Dr. Linda Rozell-Shannon with Dr. Bernard Cohen
– May 31 What is a Vascular Birthmark and Who is VBF? by Dr. Linda Rozell-Shannon

– Buddy Booby’s Birthmark Read-Alongs in 4 countries and 28 states: AZ, CA, CO, CT, FL, IL, IN, KY, MA, MD, MS, MI, MO, NE, NC, NV, NY, NJ, NH, OH, OK, OR, PA, RI, TN, TX, WI, WY

California
Diana Mendoza shares the story of her daughter Emely
The Maddox Family – Happy 5th Birthday to Carson! fundraiser page
VBF scholarship recipient Julienne Wood posts acceptance speech
Port wine stain, Vascular Birthmark Awareness month, challenge on YouTube by Aysia
Professional photo shoot with Paige Lauren Billiot (691 likes)

Connecticut
Eric Pixley shares how he became Port Wine & Proud
Kara Leake volunteered to be a VBF Parent Representative

Florida
Dr. Ana Duarte with the Children’s Skin Center and Gables Skin Center office #PutOnYourBirthmark party

Illinois
Sheehan Family’s Bravelets (Be Brave bracelets) fundraiser
Kentucky
Ethington Family’s Buddy Booby’s Birthmark book Read-Along
Michigan
July 12 Painting With a Twist fundraiser in Rochester, MI
Aug. 13 Purple Polka Dot 5K Walk/Run at Stony Creek Eastwood Beach
New Jersey
Jessica Baskin donates 20% of sales of original Bright Heart Card
New York
May 13 Marked for Greatness 5K at Vestal Coal House
Capital District NY Day of Awareness Give2myVBF Appeal
Boulton Family’s Vascular Awareness for the Future
April 21 Muscarella Family’s Italian Night Dinner and Dance in Bronx
Dr. Linda talks about DOA on Ehealthradio network on Podbean
Story by Olivia Grant, Miss Thousand Islands 2017 @missti2017 (259 likes)
Pennsylvania
Mannix Family created Give2myVBF page for daughter’s birthday
May 20 Andria Downey’s Olivia’s Bingo for Birthmarks in Bensalem
Texas
May 20 Annual Birthmark Bash of North Texas Family Fun Day in Dallas
Washington
April 15 – 30 Corinne Barinaga’s Crystals for a Cause
Canada
Ashley Dao reads Buddy Booby’s Birthmark book in Alberta
Lyndsey Berlett reads Buddy Booby Birthmark book in Ontario
Norway
July 8 Luke Kellgran runs for VBF in the the Hornindal Rundt
United Kingdom
Buddy Booby’s Birthmark Read-Alongs in Wakefield and Southhampton
Biking for Alonso from London to Paris in 24 hours!
Birthmark Support Group posts on Twitter
Mexico
Castellanos family made the cutest video: Alonso tells 5 things about his PWS”
Escobar de Gomez family posts their #PutOnYourBirthmark photo
Lebanon
Assi Family shares the story and photos of their book Respect and Accept

Baby Reagan’s Bravelets campaign raised over $620

Check back as we add more events
See past events for more ideas
Worldwide
– Put On Your Birthmark Campaign #askaccept #VBFawareness #birthmark
– Ask/Accept Anti-Bullying Video Campaign – Send your video clip to crystal.vbf@gmail.com
Alabama
– Deer Valley Elementary class – celebrates post-laser treatment with a ‘Dots Day’
California
– The Maddox Family – Help Celebrate Carson’s 4th Birthday!

– Julienne Wood – speech and research paper about vascular birthmarks
– The Riley girls – Rock The Birthmark
– Danny Larios – shared photos and story from InThisSkin project
– Paige Lauren Billiot – invited over 1800 followers to join VBF’s Day of Awareness @FlawlessAffect
– Kimberly Heintzman – DermablendPro stories

– Jessica Baxter – video outlining her birthmarks

Colorado
– Jamie Miller – charity night at a restaurant
– Kiana Barber – shared daughter’s journey

Connecticut
– Sharon and Michael – appeared in VBF’s ASK/ACCEPT 1 YouTube video
Florida
– Dru DiMattia – Sponsored Team VBF at Rotary’s Annual Run – Feb. 13
– Dr. Ana Duarte – Children’s Skin Center event – May 11
Georgia
– Rebecca Cerasani – shared story on Instagram
Illinois
– Lauren Sheehan – Bravelets (Be Brave bracelets) fundraiser

– Kristin Edgar – running 1/2 marathon in honor of niece – July 17th

– Nikki Wilkins Pedigo nurses at her workplace Put On Your Birthmark
Indiana
– SweetSnaps Photography – free photo session for children affected by a birthmark
Iowa
– Anna Whipple – post story on social media and personalize a fundraiser page
Kansas
– Shana Paula – appeared in VBF’s ASK/ACCEPT 3 YouTube video
Kentucky
– The Ethington Family – Buddy Booby’s Birthmark book Read-Along
Maryland
– Paul Siegel – Shared photo on Facebook to raise awareness
Michigan
– Kimberly Chan – 5K Race – March 19 – SUCCESSFULLY RAISED $700
– Jody and John Lee – Purple Polka Dot 5K Race – August 14
– Savalle family – Shared logo on Facebook

Minnesota
– Lucy’s Kindergarten class – read Buddy Booby’s Birthmark book and wore a sticker
Missouri

– Rachel Hudson – Hadlee’s Halo Give2myVBF fundraiser page
Nevada
– Rachel Anderson – blog about being beautifully_marked
New Jersey
– Sharon Israel – Park Lane Jewelry Flash Fundraiser
– Kim Vitale – Give2myVBF Fundraising Page
– Smart Cover – logo on website

North Carolina

– Elissa Rifkin – post Day of Awareness info on social media
– Ashley Carroll – collage of friends and family who #PutOnYourBirthmark for her daughter
– Tara Loiselle-Podvojsky – Mei’s before and after story
– Angie Mann McDuffie – Visit on facebook
– Patty Titus Shropshire family – Visit on facebook
Ohio
– Andreah Forbes Shared photo on Facebook
Pennsylvania
Andria Gottsabend Olivia’s Walk for Birthmarks
Jaysa Mannix donate in honor of birthday
Texas
Martha Griffin and Angie Shank – Birthmark Bash 2016 Family Picnic – May 15th
Washington
– Carol Kowalski – promoted on social media
Canada
– Jessica Wessels – posted logo on business website and Facebook page
– Sherry Crummy – shared photos on facebook
Trinidad
– Kianna Smith – making a video to raise awareness
United Kingdom
– Birthmark Support Group – Family Fun Day – May 22
– Aisling – shared eight birthmark stories and collage on blog
– Amy Elsegood – no make up selfie
Russia
– Olga Bachuk – Put On Your Birthmark photo on Facebook
The Philippines
– The Parcia Family – expresses thanks to VBF for helping their princess
Mexico
– The Castellanos family – Did You Know…?series of facts
India
– The Kaushal family – Put On Your Birthmark and outreach to other women with vascular birthmarks
Lebanon
– The Assi family – Shared Jade’s story and Put On Your Birthmark photo
Dominican Republic
– Johanna Infante and family – Put On Your Birthmark
Australia
– Amber Dawkins – shared facts about her port wine stain
Australia
– Michelle Leane – posted story and photo of her birthmark for the first time
Indonesia
– Ratna Mulyany – daugther’s
Arizona
– Cynthia Burr – visit on Facebook

Baby Reagan’s Bravelets campaign raised over $345

Check back as we add more events

Alabama
· Misti Nicole – shared Guilianna’s hemangioma journey
California
· Lauri Firstenberg – Edie’s JoinMe page

· Alison & Ben Maddox – honor son’s birthday

· Crystal Hodges – posted “Making a Difference” video

· Kelly and Sam Rogers – appreciation video
· Jennie Legary – started @vbf_usa Twitter feed and ask/accept Instagram posts

· Alana Kamins – sells artwork online

Colorado

· Jamie Miller – Buddy Booby Read-Along at school

Illinois

· Lauren Sheehan – Bravelets (Be Brave bracelets) fundraiser

Iowa

· Kelly Stack – Buddy Booby Read-Along at school

Kansas

· Mallory Radtke – JoinMe page

Massachusetts

· Christina Duncan – Buddy Booby Read-Along at church

Michigan

·Jo Price Photography – Buddy Boody Read-Along

Minnesota

· Lucy Wang – fundraiser at restaurant

New Jersey

· Sharon Israel – fundraiser at Alex and Ani jewelry store

New York

· Fran Muscarello – themed-dinner event

· Kyla Manny – Chasing the Cure Golf Tournament

· Joanmarie DiMirco – JoinMe page

· Dr. Gregory Levitin – career day presentation at middle school

NorthCarolina

· Stacy Greenway Wozny – daughter’s story on VBF’s #askaccept Facebook page

Ohio
·John J Brown III – JoinMe page

Pennsylvania

· Andria Gottsabend – Olivia’s Walk for Birthmarks

· Rhonda Carapella – fundraiser at Charming Charlie store

· Jaysa Mannix – donate in honor of birthday

Texas

· Kelsey Hendricks – Buddy Booby Read-Along

· Texas Children’s Hospital – Share 12 copies of Buddy Booby’s Birthmark book

Washington

· Lisa Lanza – piano performance fundraiser

Canada

· Elizabeth Poon – JoinMe Birthday Page for daughter

India

· Batool Kaushal – information table at medical camp

· Tanya Kaushal – presentation at international school

United Kingdom

· Andrew – shared his story

Trinidad and Tobago

· Kiana Smith – posted a video

VBF Board Members

• VBF Parent Rep Natalie and Treasurer Brian Bolinger – Texas,
  October 2009 – Silent Auction and Texas Hold ‘Em –
  Annual event and largest Day of Awareness fundraiser. Their daughter
  Nicole had a hemangioma.
• VBF Secretary/SWSC Co-Director – Tiffany Ethington and son Glen
  Ethington. Tiffany and Glen have an annual interview on noon news
  to raise awareness. Glen has Sturge-Weber syndrome/facial Port Wine
  Stain, and organized a newsletter and pen pal group for kids with
  birthmarks and their siblings/friends called “Glen’s
  Gang”. VBF Chapter Director/SWSC Co-founder Glenda Ethington
  also helped organize this annual event.
• VBF Executive Assistant Basia Joyce – VBF Walk/Run organizer.
  Basia’s daughter Anna had a hemangioma.
• VBF Director of Musicians with Birthmarks Jenny Legary –
  Jenny is putting on a show in NY. Jenny has port wine stain.
• VBF Parent Rep Danielle Vlahos – Each year Danielle hosts
  a “Jeans Day” at her workplace. Danielle’s son
  Cole had a hemangioma.
• VBF Parent Rep Lianne Chase – Team running in the VBF
  Walk/Run in NY. Lianne’s son Cody has a lymphatic malformation.
• VBF Legal – Barbara Rothaupt – VBF Walk/Run organizer
• VBF President Dr. Linda Shannon and daughter Christine Shannon
  – VBF Walk/Run organizer. Christine had a hemangioma on her
  lip and was the inspiration for the organization of VBF.
• VBF Parent Rep Elysa Baron and her daughter VBF Student Rep
  Saige Cavayero – Selling VBF Kids Who Care bracelets and organizing
  a team for the VBF Walk/Run. Saige was the inspiration for the bracelets.
  She designed them as a fundraiser for the first VBF Day of Awareness.
  Glen’s Gang and the VBF Kids Who Care program used Saige’s
  original design for adult bracelets and designed a blue/white swirl
  bracelet for children. Saige had extensive facial hemangioma.

• Donna Ducker and Evan Ducker – International Event – Buddy
  Booby Read-Along – Buddy Booby is the mascot for VBF. Mother
  and son authored the “Buddy Booby’s Birthmark”
  book about a booby bird with PWS. Evan Ducker has a facial PWS
• Lisa Burdick – Saegertown, PA Collection Box
• Allen Stotler – Sunrise, FL – Collection Box and VBF Starter
  Kits
• Arlin Diaz – Hopelawn, NJ – Collection Box
• Mike Jackson – Newton Centre, MA – VBF Starter kits
• Rita Jones – Grand Saline, TX – Collection Box
• Kate Steele – Dekalb, IL – Collection Box and VBF
  informational materials – In Honor of Aliyah Steele and VBF
• Karenina – Advance, NC – in Honor of daughter, Juliana
  Grubb – VBF informational materials
• Bianca Shemper – Hattiesburg, MS – VBF Stickers
• Kathy Wyrick – Lake City, FL – Article in local
  paper and informational pamphlets
• Jan and Andrew Dreger – 3rd annual Awareness Day Event
  at family
  owned/operated restaurant- Campbell’s Boat House in Media, PA. Percentage
  of sales donated to VBF
• JoAnn Campbell – Media, PA – Buddy Booby Birthmark Read
  Along to students at St. Cornelius School. JoAnn is a teacher in
  Chadds Ford, PA. Also, video montage shown to students of grandson
  Owen Dreger.
• Rabbit Hill Nursery School – Springfield, PA – Buddy Booby
  Read Along to Owen Dreger’s Pre-school class.
• Vanessa Beall – Aptos, CA – Collection Box –
  In honor of Lillie Nichols
• Christine Sylvester – Milwaukee, WI – postcard and
  sticker campaign to friends and family
• Kathleen Miller – Slingerlands, NY – Lunch and Learn,
  collection box – In honor of Camryn Shea Miller

• VBF Latin America – Andrea Domingues – São Paulo, Brazil
  – Medical Lecture – Each year Andrea hosts a meeting of People
  with Hemangioma and Linphangioma Brazil. The conference is organized
  by ABRAPHEL, a Brazilian association for people with Hemangioma
  and Lynphangioma. Andrea’s daughter, Gabrielle, has Proteus
  syndrome.
• VBF India – Santo Banerjee – Kolkata, West Bengal, India
  – Writing an article in the local newspaper. Santo’s
  son, Sumangal, has SWS.
• VBF Poland – Ewelina Ochab – plans pending
• Sturge-Weber Syndrome Community (SWSC) – Lexington, KY
  – Tiffany and Glen Ethington – Tiffany and Glen have an annual
  interview on noon news to raise awareness. Glen has SWS/PWS and
  organized a newsletter and pen pal group for kids with birthmarks
  and their siblings/friends called “Glen’s Gang”.
  • Glenda Ethington , SWSC – distributing informational
    pamphlets to local hospitals/doctors.