Down Syndrome Association of South Texas • 2800 NW Loop 410 • San Antonio, TX 78230 • (210) 349-4372
Volume 17, Issue 2
April 2015
What’s
inside...
HUGS Gala............................ 1-3 Save The Date!...........................1 Brighton Parenting Classes......3 Executive Director.....................4 Spanish Meeting........................4 The Big Give S.A.......................4 DS-Connect................................5 Buddy Walk 2015......................5 Summer Programs....................6 Research Opportunity..............7 Softball League...........................7 Home Health Care....................7 News & Notes............................8 Special Events.............................9 Board Highlight.........................9 Outreach...................................10 World Down Syndrome.........10 National Advocacy Award.....10 DSASTX Mini-Conference....11 Contributions...........................11 Who We Are............................11 Connect With Us.....................11 The Big Give S.A.....................12
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Keeping Up With
2nd Annual HUGS Gala A Huge Success!
The Down Syndrome Association of South Texas held its 2nd Annual HUGS Gala on March 17th at the Hill Country JW Marriott Resort & Spa. The theme of the evening was Celebrating World Down Syndrome Day and Angie and Steve Ramseur were the fabulous co-chairs of the event. Angie and Steve are parents to Josh, Grace, and Riley. Riley is nine years old and has Down syndrome. They were instrumental in bringing approximately 250 guests to the event to enjoy an evening of mingling, dinner, and a wonderful program.
support they have received and encouraged additional support from others. The DSASTX is truly grateful for their dedication to our mission, as well as their willingness to support and host the Gala this year!
Steve Spriester, KSAT12 News Anchor, served as the Master of Ceremonies and started off the event by bringing awareness to an important day that has been set aside to celebrate Down syndrome – World Down Syndrome Day, which takes place on March 21st. World Down Syndrome Day (WDSD) is a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder, but there is still so much more we can do.
To give everyone an idea of how inspirational this evening was, we have included in the newsletter the stories that the Ramseur and Schlundt families shared at the Gala.
DSASTX Chairman of the Board, Edward Leos, spoke about the mission of the DSASTX and how the staff and board are working tirelessly to raise awareness, promote inclusion, and support our local children and adults with Down syndrome and their families. He thanked our generous donors and all those who render support in so many different ways. The DSASTX is so appreciative to have had the support of the following Gala sponsors: M & D Management The Gordon Hartman Family Foundation Veronica and Ruben Escobedo Valero Energy Foundation Angie and Steve Ramseur Whataburger Pape-Dawson Engineers HEB Grocery Mary Nelson Kathy and Art Ramseur Deerfield Animal Hospital Construction Resolution Group (CRG) Pediatrix Medical Group Jones Lang LaSalle Fuddruckers/Luby’s Williams, Crow, Mask, LLC Dr. Morgan and Mrs. Sean Dunne Christy Anderson The Marianne & Roger Staubach Fund Love’s Travel Stops Angie and Steve Ramseur kicked off our program with an inspiring story of their journey with Riley. They spoke of their appreciation to the DSASTX for all the
We were blessed to have amazing parents, Holly and Dale Schlundt, also speak about their new life with Ty, their 16-month-old son. They talked about their journey from receiving the diagnosis early in the pregnancy to establishing relationships with other families because of their involvement with the DSASTX.
The evening also included a video showcasing the many events the DSASTX has hosted, as well as additional stories from parents sharing their feelings about having a child with Down syndrome and how the DSASTX helped them navigate the journey. A wine pull was part of the fun and everyone was able to “pull” a bottle with the hopes of getting the ultimate bottle, the Chateau Montrose valued at $300! Two prizes were raffled at the event: 1) A Dallas Cowboys Package donated by Roger Staubauch, former quarterback for the Dallas Cowboys, which included two Southwest Airlines tickets donated by Southwest Airlines. 2) A pearl necklace donated by Gurinsky’s Jewelers in memory of Kimberly Ratcliff, who had Down syndrome. Larry Westrich won the Dallas Cowboys raffle and Linda Haile won the pearl necklace. Special thanks to our amazing volunteer, Ashley Orndorff for her talent and patience. Ashley helped us by designing the Gala invitations, place cards, and programs. Because of the success of this event, the DSASTX raised over $115,000 for the programs and services we provide the individuals with Down syndrome and their families. We could not have done it without the generous donations received that evening, and we are grateful to everyone who attended. We look forward to the 3rd Annual HUGS Gala to be held Friday, March 4, 2016 at the JW Marriott Resort and Spa. Watch for more details to come.
Additional information on page 4
Keeping Up With Downs presentation Given by the Ramseur Family at HUGS Gala 2015: The Best Gifts Frequently Arrive in the Most Unexpected Packages.
We want to leave you with a couple of reflections ten years into this unexpected journey. First, it is the difficult things in life that produce the greatest rewards. The steepest climbs afford the most panoramic views. Second, this is not a journey we could have walked alone. Every step of the way, our friends, family, church and the DSASTX were walking along with us. We could not have done it without you. Third, the best gifts frequently arrive in the most unexpected packages. Some just take a little longer to unwrap. Thank you,
Ramseur Family
The Ramseur Family
Riley Paul Ramseur arrived April 12, 2005 at 36 weeks, 1 month early. He was our third child. The pregnancy was difficult, and this day would prove no different. Angie called me at work to let me know she was having complications, and I was to meet her at NE Baptist. As I headed through the lobby, I saw Angie’s doctor racing for the elevator. We were headed in the same direction. Riley was having complications, and we made the decision to have an emergency c-section. “For you formed my inward parts; you wove me in my mother’s womb” (Ps. 119:13) Later that afternoon, Angie was recovering and I was in the waiting room looking at Riley through the glass. As friends and family slowly trickled out, our pediatrician came out. She said Riley had five of the six markers for Down syndrome and that the geneticist would be by later that evening. The distance from the waiting area to Angie’s room was not more than 100 feet, but it felt like 100 miles. We spent the next 30 minutes alone, crying and rejoicing. You see, mothers have a sixth sense – Angie knew Riley had been blessed with Down syndrome the moment the doctor put him in her arms in the OR. We both knew intuitively that God had prepared our family for this gift. “I will give thanks to you, for I am fearfully and wonderfully made” (Ps. 139:14) This is where our 10-year journey with the Down Syndrome Association of South Texas begins. A volunteer from the DSASTX came to Angie’s room with a packet of information about the support we could expect as a family. Over the years, we attended educational meetings, the Buddy Walk, Riley plays baseball in the Challenger League, and we have become close friends with other families of children with Down syndrome. We don’t want to be “Polyanna” about having a child with special needs – it is hard work. Riley had medical issues (most of which were unrelated to Down syndrome) that would require more than a dozen surgeries and even more hospital stays. We want to briefly introduce you to Riley. He does what other children do, just a little slower. He has a sixth sense – he can feel when people are hurting, and he shows amazing empathy. Finally, he loves to laugh! We do not know what we would do without him in our lives. “All the days ordained for me were written in your book before one of them came to be” (Ps. 119:16) Angie, Grace, Joshua, Riley and I are humbled to serve as this year’s HUGS gala co-chairs. We have fallen in love with Terri and the staff and want to express our appreciation for all they do. We also want to thank the financial supporters and countless volunteers. This event and the DSASTX would not exist without your selfless giving of your time and money.
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It is with great pleasure that we honor our wonderful volunteers from the HUGS Gala. We would like to extend our appreciation to all of our volunteers who helped us make the night a smooth success! At the Gala, we honored HEB Tournament of Champions for their service and commitment to the community and the DSASTX. This was further extended by having HEB employees volunteer their time at the Gala. Thank you to the following volunteers: Rosemary Quintanilla, Crystal Ramos, Fausto Villarreal, Peter Soltys, Ashley Soltys, Lorena Acevedo, Candace Kimble, Tracy Pickering, Sonya Chapa and Kerri Bonham. In addition, Jessica Garcia, Jaleda Brushae, and two Grande Communications volunteers, Stephanie Cano and Jessica Lackmeyer, helped us set up the room and centerpieces. We would like to give a special thanks to our wonderful board member, Tricia Cooke, and her volunteers for donating the supplies and manpower to decorate and set up the Wine Pull table.
www.dsastx.org presentation Given by the Schlundt Family at HUGS Gala 2015:
The Association has truly been a blessing for us, and we consider them our extended family. We have met so many wonderful families through this organization that we would have never crossed paths with if it wasn’t for our son Ty.
Carrying Those in Their Greatest Time of Need Footprints
Schlundt Family
One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky. In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was only one. This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
The DSASTX is an organization that gives – gives in the truest sense of the word. Yet, when we speak of organizations it is easy to think of them as just some large entity. What we often overlook are the individuals who make up that entity – the members, the volunteers, and the families. We hope that as one large extended family, we will all remind our community what the outcome is of supporting the Down Syndrome Association of South Texas – that so many individuals of all ages with Down syndrome will know there are people in this world that do not forget them and “carry” them when perhaps there is no one else to do so. Thank you, The Schlundt Family
“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?” The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.” – Mary Stevenson, 1936. This poem truly defines the Down Syndrome Association of South Texas. They “carry” families in their time of need. My wife and I know; we were one of the families in need. We were prenatally diagnosed with the knowledge that our son, Ty, was going to have Down syndrome. Despite the good intentions of our doctor, they did little to answer our questions and, more importantly, alleviate our fears about the future, both short and long term. Luckily, through the well-known efforts and outreach of the Down Syndrome Association of South Texas, our doctor referred us to them. We found out our son had Down syndrome when we were 12 weeks pregnant. We were both scared and nervous and had never known anyone that had Down syndrome before. We wanted to get involved and find out all we could about Down syndrome before our son came into the world. We wanted to be proactive. The DSASTX immediately put us in contact with our mentor family, the Fernandez family. They were always there for us whenever we had any questions or fears, and they always put us at ease. It really helps and makes things easier when you can reach out to others who have been there before and can relate to the hurdles you’re experiencing. How can we tell this story without mentioning the leadership behind the DSASTX, Terri Mauldin. Her tireless efforts go above and beyond what anyone could ever expect. Our constant quest to help our future baby boy led us to ask many questions. Terri met with us on several occasions to sit down and simply talk. When Ty was born, she made it a point to visit us at the hospital, as she does with many families. The DSASTX holds numerous events throughout the year to not only get people involved, but also connected. Many of the families we have met we now see on a regular basis, and this will bring many cherished friendships for Ty in his future. That, in itself, is priceless and we attribute it to the DSASTX.
The Spanish sessions began on Tuesday, April 14th, and the English sessions on Thursday, April 16th. This is a 2-hour class that runs for 10 consecutive weeks. Free childcare is provided. Seating is still available!
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Keeping Up With Downs
Executive Director We are changing the Keeping Up With Downs newsletter format a bit, and I hope all our readers enjoy it! We hope to add more useful information for both parents and supporters by sharing articles on what has been happening the past few months, as well as resources and research updates.
The first few months of 2015 have been busy for the Down Syndrome Association Terri Mauldin of South Texas! We have added two new programs for children and adults with Down syndrome, the Book Club and the Club Up! We have held several events for the families, including a formal dance for the adults and an Easter egg hunt for Playgroup and Kid Connection participants. On March 21st, we celebrated World Down Syndrome Day with the introduction of the new tumbler sold at HEB stores. This tumbler features artwork by Adrienne Alvarado who is 2 years old. The tumblers are available at select HEB stores around the area, and a portion of the proceeds will be given to the DSASTX! Thank you, HEB! We are very excited to be partnering with the Brighton Center to offer 10 weekly parent training classes for free! Please see the information in this newsletter. The DSASTX is planning a very busy summer and fall, as well! The Annual Spring Picnic will be held at Morgan’s Wonderland on May 17th. The venue has been changed from Landa Park to make it more convenient and allow for more to attend! In addition, DSASTX Day at Splashtown will be held on August 15th and the Buddy Walk is set for Saturday, September 26th at Heroes Stadium. If you have a company or organization that is interested in sponsorship opportunities for the Buddy Walk, please contact me.
Spanish Meeting
¿Es Usted Padre de un Niño con Síndrome de Down? La Asociación Síndrome de Down del Sur de Texas le Invita a Nuestro Grupo de Apoyo en Español. Fecha: El cuarto Miércoles de cada Mes Tiempo: 5:30-7:30 p.m. Ubicación: El Hogar de Los Vecino (Conference Room # 2) 3014 Rivas Street, San Antonio, Texas 78228 Por favor confirma tu asistencia! mevans@dsastx.org. Habra guarderia disponible para ninos de 3 meses a 12 anos de edad. Contaremos con una cena ligera.
The Big Give S.A. was such a huge hit last year, that they have extended the coverage to include the South Central Texas region! Overall, the city raised nearly 2.1 million dollars for local nonprofit organizations in just ONE DAY! This is a day that unites San Antonio and helps build community awareness for the amazing work provided by area agencies. The Big Give S.A. is part of a national movement known as Give Local America. The purpose of this one day giving event is to increase public awareness of the impact local nonprofits make in addressing community needs. It brings together donors and nonprofits to expand online giving and make giving FUN! Currently, The Big Give S.A. is the largest participating area for Give Local America 2015 with 800 nonprofits registered! Last year, the DSASTX raised over $4,600 thanks to the help of our families, volunteers and board members! The Big Give S.A. is a social media driven campaign, and we ask that you participate by liking and sharing our posts with your friends and family, as this will increase exposure! This year we have some really cool contests and prizes including: • Driskill Hotel Austin 1-night stay • FOUR passes to Laugh Out Loud • FOUR passes to Sea World • And much more… Stay connected through our social media to watch the excitement and contest rules! YOU and The Big Give S.A. can help the DSASTX reach additional funding to maximize and sustain our programs and services. There are numerous ways to participate in this South Texas giving challenge: 1. On May 5th go to The Big Give S.A. website www.TheBigGiveSA.org and choose the Down Syndrome Association of South Texas and donate $10 or more. 2. Follow The Big Give S.A. on Facebook at www.facebook.com/ BigGiveSA and Twitter at www.twitter.com/TheBigGiveSA. 3. Follow the DSASTX on Facebook at www.facebook.com/ downsynstx or Twitter at www.twitter.com/downsynstx.org to monitor our progress and share our posts with your family and friends to produce an even stronger impact. 4. Become a DSASTX Advocate by helping us spread the word! Share our emails and posts! 5. Promote our hashtag #BigGiveDSA on social media.
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A Life-Changing Research Tool DS-CONNECT : THE DOWN SYNDROME REGISTRY IS A SECURE AND CONFIDENTIAL ONLINE DATABASE OF HEALTH INFORMATION GATHERED FROM PEOPLE WITH DOWN SYNDROME. ®
Families are of helping National FAMILIES ARE HELPING the National Institutes Health the (NIH)
(NIH) understand why many people with DownInstitutes syndrome of areHealth more likely to get certain whymany many diseases such as leukemia or Alzheimer’sunderstand disease, and why are people protected with Down syndrome are more from other diseases such as solid-tumor cancers, heart attacks, and stroke. In addition, families who participate in the registry they choose to, connect likely tocan, getifcertain diseases such with scientists working on studies from improved speech to drug trials for Alzheimer’s as leukemia or Alzheimer’s disease. They can also record their child’s height and weight and follow their growth disease, and why many are measurements. Families can enter information about their preferred healthcare providers protected from other diseases to help other families who may be looking for a specific provider in their area. such as solid-tumor cancers, “Research is the only way to develop new treatments, test new medications, and heart attacks, and stroke. improve the health of children and loved ones with Down syndrome,” said Vittoria Aiello, who enrolled her 4-year-old daughter, Federica Albanese, in the registry. In addition, families who “Since DS-Connect gathers health information specific in to people with Down participate the registry can, if syndrome, it encourages new research studies and the testing new medications.” they choose to, connect with scientists working onofstudies from “Once youspeech register, to youdrug can look at allfor theAlzheimer’s same anonymous information improved trials disease. They can researchers can look at,” said Melissa Parisi, M.D., Ph.D., Chief of the Intellectual also record their child’s height and weight and follow their growth and Developmental Disabilities Branch at the Eunice Kennedy Shriver National measurements. Families can enter information about their Institute of Child Health and Human Development. “You’re able to compare your preferred healthcare providers to help other families who may be information to that of individuals of similar ages and genders, and use that to figure looking for a specific provider in their area. out what questions to ask your doctor.” All medicalisdata stripped personally identifying information,test andnew the registry “Research theisonly wayof to develop new treatments, meets more thanand 250 stringent established by the Federal Information medications, improveguidelines the health of children and loved ones Security Management Act. Over 2,500 peopleAiello, with Down have signed up with Down syndrome,” said Vittoria whosyndrome enrolled her so far, with a goal of 10,000. 4-year-old daughter, Federica Albanese, in the registry. “Since “The registry empowers families and people with Down syndrome, and we’ve DS-Connect gathers health information specific to people with really directed it toward them and their health needs,” Dr. Parisi said. “Our major Down syndrome, it encourages new research studies and the goal is to improve the quality of life for people with Down syndrome.” testing of new medications.”
Join DS-Connect at dsconnect.nih.gov. us get to 10,000! “Once you register, you can look atHelp all the same anonymous information researchers can look at,” said Melissa Parisi, M.D., Ph.D., Chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development. “You’re able to compare your information to that of individuals of similar ages and genders, and use that to figure out what questions to ask your doctor.”
All medical data is stripped of personally identifying information, and the registry meets more than 250 stringent guidelines established by the Federal Information Security Management Act. Over 2,500 people with Down syndrome have signed up so far, with a goal of 10,000. “The registry empowers families and people with Down syndrome, and we’ve really directed it toward them and their health needs,” Dr. Parisi said. “Our major goal is to improve the quality of life for people with Down syndrome.” Join DS-Connect at dsconnect.nih.gov Reprinted with permission from Down Syndrome World magazine. Become a member of the Global Down Syndrome Foundation to receive the magazine and other benefits at www.DownSyndromeWorld.org.
Saturday,
September 26, 2015 Heroes Stadium 4799 Thousand Oaks Presenting Sponsor - $25,000 • Logo and name recognition on cover of Buddy Walk Brochure mailed out in July to over 6,000 people, businesses, clinics, schools, and hospitals • Logo and recognition as Presenting Sponsor on the back of Buddy Walk t-shirts, given out to approximately 6,000 Buddy Walk participants • Recognition in all radio, television, and print advertising and press releases • Logo on over 5,000 giveaway items distributed to all walkers • Prominent placement of logo and name listed on the DSASTX website with link to company site • Exhibitor booth at Buddy Walk • 20 copies of the 2016 DSA Calendar Great Buddy - $10,000 • Logo and name recognition on cover of Buddy Walk Brochure mailed out in July to over 6,000 people, businesses, clinics, schools, and hospitals • Logo on the back of Buddy Walk t-shirts, given out to approximately 6,000 Buddy Walk participants • Logo and name listed on the DSASTX website with link to company site • Logo on giveaway items distributed to all walkers • Exhibitor area sponsor and an exhibitor booth at Buddy Walk • 15 copies of the 2016 DSA Calendar Big Buddy - $5,000 • Logo and name recognition on cover of Buddy Walk Brochure mailed out in July to over 6,000 people, businesses, clinics, schools, and hospitals • Logo on the back of Buddy Walk t-shirts, given out to approximately 6,000 Buddy Walk participants • Logo and name listed on the DSASTX website with link to company site • Logo on giveaway items distributed to all walkers • Kids’ Activity Area sponsor and an exhibitor booth at Buddy Walk • 10 copies of the 2016 DSA Calendar Special Buddy - $2,500 • Logo and name recognition on cover of Buddy Walk Brochure mailed out in July to over 6,000 people, businesses, clinics, schools, and hospitals • Logo on the back of Buddy Walk t-shirts, given out to approximately 6,000 Buddy Walk participants • Logo and name listed on the DSASTX website with link to company site • Logo on asphalt stickers placed along the walk route Cool Buddy - $1,000 • Logo and name recognition on cover of Buddy Walk Brochure mailed out in July to over 6,000 people, businesses, clinics, schools, and hospitals • Logo on the back of Buddy Walk t-shirts, given out to approximately 6,000 Buddy Walk participants
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Keeping Up With Downs
SummerPrograms The following is a partial list of summer programs that accommodate for children with special needs. Start now to prepare for a successful summer! ANIMAL BOTANICAL SATURDAYS & SUMMER CAMPS Hands-on learning and fun for youth with special needs ages 7 and older at the San Antonio Botanical Garden, 555 Funston, San Antonio 78209. Contact Timothy Roan at (210) 207-3278 or timothy.roan@sanantonio.gov. Saturday camp: Saturday, May 2, 9 a.m.-1 p.m., $25. Summer camp: August 10-14 (ages 7-19), 9 a.m.-1 p.m. Fee: $170/week (10% discount for members). https://www.sabot.org/?nd=animalbot
THE ARC OF SAN ANTONIO – LIFE ENRICHMENT PROGRAMS After school (2:30-6:30 p.m.), holiday and all-day summer care (7 a.m.-6:30 p.m.) for individuals 5-18. The Arc of San Antonio, 13430 West Ave., San Antonio 78216, (210) 490-4300. The Arc of San Antonio – Pam Stephens Center, 6530 Wurzbach, San Antonio 78240, (210) 682-4200. http://arc-sa.org/pages/services/life-enrichment-children/
A.W.A.R.E. San Marcos Therapeutic horseback riding and sports riding for individuals with physical, mental and/or emotional disabilities. 1708 Center Point Rd., San Marcos, Texas. (512) 754-6773. http://www.awaresmtx.org/
CAMP BLESSING Five-day summer camps for persons 7 years or older with a physical or intellectual disability. Siblings ages 7-13 are invited to participate. Two locations: Hill Top Camp in Garrison, Texas and Camp Holy Wild in New Caney, Texas. (281) 259-5789. office@campblessing.org. http://campblessing.org/index.php/home
CAMP C.A.M.P. Summer overnight camp sessions located in Centerpoint, Texas for individuals with special needs (ages 5-50) and their siblings (ages 5-13). Parent’s Night Out, Respite Weekends, and Teen & Adult Day Adventure programs are also available. (210) 671-5411. http://www.campcamp.org/
CAMP PALS Weeklong overnight camp for young adults with Down syndrome ages 18-25 at various locations throughout the U.S. http://www.palsprograms.org/
CAMP SUMMIT Summer weeklong camps, weekend sessions, and respite days in Argyle, Texas for individuals with disabilities ages 6 and up. (972) 484-8900. www.campsummittx.org
DEER CREEK ADVENTURE CAMP – FRIENDS WEEK A Christian overnight camp for children and adults with special needs ages 7-19 in Medina, Texas. August 3-8. (830) 589-7123. http://deercreekcamp.com/
DISCOVERY MEADOW STUDIOS Celebrations, Kindermusik Adventures, and Camps allow children of all ages to learn and play within a rich environment of music, art, or science. 424 Weidner Road, Cibolo, Texas 78108. Contact Sally at (210) 455-7387 or sally@discoverymeadowstudio.com. http://www.discoverymeadowstudio.com/
Dreams Fulfilled Through Music Music programs for youth and adults with disabilities. Contact Mary Kathryn Archuleta at (210) 771-5809. http://dreamsfulfilledthroughmusic.org/
ENABLED SUMMER CAMP A youth camp for people with disabilities of all ages where you can worship freely with other believers. Lakeview Camp and Retreat Center, Waxahachie, Texas. June 1-5. (765) 301-1305. http://www.enabledteam.org/
EVA’S HEROES SUMMER ENRICHMENT PROGRAM Six weeks of fun and exciting activities for individuals ages 14-21. (210) 694-9090. http://www.evasheroes.org/
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JEWISH COMMUNITY CENTER Inclusive programming for children who are typically developing or have special needs. Four-week sessions and 1-week sessions. Kindergarten through 8th grade. 12500 NW Military Hwy., San Antonio 78231. (210) 302-6820. http://www.jcccampsanantonio.org/
KINETIC KIDS Sports and recreation for all abilities. A variety of summer programs at various locations. (210) 748-5860. http://www.kinetickidstx.org/
MARBRIDGE SUMMER CAMP Summer 5-night camp at Manchaca, Texas designed for individuals ages 16-30 with cognitive challenges or developmental disability. (512) 282-1144, Ext. 1204. http://www.marbridge.org/summer-camp
MISSION POSSIBLE An inclusive overnight camp for youth with and without disabilities who have completed 2nd grade. The focus is on each camper’s abilities and not their disabilities. July 7-9. 4-H Conference Center, 5600 FM 3021, Lake Brownwood, Texas. Contact dlocke@ag.tamu.edu or (979) 845-6535. http://texas4hcenter.tamu.edu/services/youth-camps-and-retreats/missionpossible
MONARCH ACADEMY AT MORGAN’S WONDERLAND Weeklong summer day camps for children with special needs and siblings ages 9-16. Managed by the YMCA. 8 a.m.-4 p.m. 5235 David Edwards Dr., San Antonio 78233. (210) 479-3311. http://monarchacademy.net
MORGAN’S WONDERLAND The world’s first ultra-accessible family fun park. (877) 495-5888 or (210) 495-5888. https://www.morganswonderland.com/
Respite Care of San Antonio Mother’s Day Out, Family Day Out, Parent’s Night Out, and Developmental Daycare Center. (210) 737-1212. http://www.respitecaresa.org/
R.O.P.E.R. (Riding Opportunities Promoting Exceptional Riders) Horseback riding for individuals with disabilities. 4991 Higdon Rd., San Antonio 78223. Contact Sherri Mell at (210) 633-2042. http://www.freewebs.com/roperapp/
THE SADDLE LIGHT CENTER FOR THERAPEUTIC HORSEMANSHIP Equestrian therapy for individuals with special needs. Retama Equestrian Center, 17530 Old Evans Rd., Selma, Texas 78154. (210) 651-9574. http://www.thesaddlelightcenter.com/
SAN ANTONIO BUSY BODIES A nonprofit motor behavior and learning program. 11985 Starcrest, San Antonio 78247. (210) 545-2840. http://www.sabusybodies.org/
SOAR – Summer Outreach and Recreation Program Weeklong summer day camp for kids 6-17 years old with intellectual developmental disabilities offered by Mission Road Ministries, 8706 Mission Rd., San Antonio 78214. Monday-Friday, 9 a.m.-3 p.m. (210) 334-2427. http://missionroadministries.org/programs/children/soar-summer-camp
TEXAS ELKS CAMP Summer weeklong overnight camp for children with special needs ages 7-15 located in Gonzales, Texas. (830) 875-2425. http://www.texaselkscamp.org/
TEXAS LIONS CAMP Summer weeklong overnight camp in Kerrville, Texas for individuals with Down syndrome ages 12-16. July 12-18. (830) 896-8500. http://www.lionscamp.com/default.html
Triple H EQUITHERAPY Equine assisted activities and therapy for people with disabilities. 791 Backhaus Rd., Pipe Creek, Texas 78063. (830) 510-9515. http://triple-h.org/
www.dsastx.org
Research
WISC-V PSI Standardization Pearson is conducting a national research study on the WISC-V PSI, a digital intelligence assessment for ages 6-16. Types of candidates needed: • Intellectual Disability, Mild • Gifted & Talented • ADHD • Specific Learning Disability, Mathematics • Specific Learning Disability, Reading • Autism Spectrum Disorder with Language Impairment Assessment time should not be longer than 1.5 hours, and participants will be compensated for their time. Ages 6-14: $50 and ages 15-16: $75 Vineland-III Standardization Pearson is conducting a national research study on the Vineland‐III, a measure of adaptive behavior from ages 3-90. Types of candidates needed: • Intellectual Disability, Mild, Moderate or Severe • Autism Spectrum Disorder, High or Low Functioning Assessment time should not be longer than 60 minutes, and participants will be compensated for their time. BETA-IV Standardization Pearson is conducting a national research study on the BETA‐IV, a non-verbal intelligence assessment. We need candidates aged 16-64 diagnosed with Intellectual Disability, Mild and Moderate. Assessment time should not be longer than 30 minutes, and participants will be compensated $15 for their time. If interested, please contact Jennifer Japhet at jennifer.japhet@ pearson.com. Mention you were referred by the Down Syndrome Association of South Texas and Pearson will make a donation if you are chosen to participate! LET’S PLAY SOFTBALL! SWISD and SW Pony League invite you to join their recreational softball league for people with special needs! Lone Star Play Ball has operated softball leagues in the central San Antonio area since 2009. Mike Abrego, the league director for LSPB, wants to begin with at least four teams of ten players each. Games will be played on Saturday mornings beginning on September 12 and end October 31. Games are non-competitive and last about one hour. There are no practice times. The league is open to both men and women who: 1) are 15 and over 2) have a parent or caregiver present at the games 3) do not have a diagnosis of being emotionally disturbed 4) players in wheelchairs are encouraged to participate The league provides all equipment including a full uniform. The league fee is $20. Players will have volunteers to assist them while batting, running the bases, and playing the field. Registration began on January 15th on a first-come, first-served basis. For questions contact Ed Taylor at (210) 497-7107 or etaylor6@satx.rr.com.
Home Health Care
A Plus Family Care is a home health agency in San Antonio that provides speech therapy, occupational therapy, physical therapy, nursing, and provider services. They are one of the premier pediatric companies in San Antonio with over 60 pediatric therapists on staff! A Plus has been influential in the development and treatment of many children with special needs in San Antonio. One such child is Nicolas Garza who was born on September 14, 2011. When Nicolas was just two months old, he had to be placed in the ICU for three months due to GI complications. When he was four months of age, Nicolas was diagnosed with Down syndrome and started his journey with therapy. At the time, he had difficulty with feeding, basic motor skills, and sensory issues. The amazing therapists at A Plus worked with him diligently at his own pace tackling one skill after another in a steady progression. The excellent rapport he and his therapists developed has allowed him to reach a point in his progression where he is now mastering several age-appropriate developmental milestones. Nicolas currently is eating solids and drinking fluids without any episodes of aspiration. His mother noticed the improvements soon after therapy had begun. His overall improvements will allow him to eventually begin writing and doing activities of daily living. Next week, Nicolas will be receiving an award of academic excellence and perfect attendance. A Plus Family Care is an active participant in the San Antonio community and is currently offering free hearing screenings, as well as free screening for OT, PT, and ST on a case-by-case basis. For more information on A Plus Family Care, contact Alexander Epstein at (210) 254-2982.
Our friends at A-Plus Pediatric Home Health provided a list of questions to ask when trying to find the best home health agency: • How many years has the person providing the treatment been practicing? • Is the provider available in the morning, afternoon, or both? • Who do I contact if I have a problem with the provider? • How long does this type of treatment last? • Will the person who does the evaluation also be providing the therapy/treatment? • If the provider is unavailable for work, will a replacement be provided? • If feeding therapy is recommended, do I need to purchase snacks and/or food for the treatment? • Do I have a choice in how many days my child is seen for therapy? • Does your company offer the choice of a male or female provider? • If a patient is receiving physical therapy, why are they not receiving occupational therapy? • If my child is receiving speech therapy, can he/she also get feeding therapy? • Is the provider an independent contractor or employee?
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News & Notes! SPRING FORMAL The Adult Matters Spring Formal was held on Saturday, March 7th at Sunset Station. We had over 30 adults with Down syndrome and other special needs eat and dance the night away. Once the music started, the dance floor was the place to be! Everyone had a great time! We provided the attendees with corsages and boutonnieres, a lovely dinner, and professional formal photos from our amazing photographer from Rebekah Jean Studio.
If you are looking for your photos, please visit her Facebook at: www.facebook.com/ RebekahJeanStudio. She has granted permission to download the photos from there. We also want to thank Mr. Cortez with Cortez Photos for his wonderful candid photos. Jennifer and Emma, our volunteers from NuStar Energy, had a great time volunteering by checking participants in and dancing. Of course, we can’t forget the best DJ in town, Richard Hughes, who performs at all of our events! ACE Appreciation Dinner On Tuesday, February 10th, we held our annual Adult Continuing Education (ACE) program Volunteer Appreciation Dinner at Alamo Café. The theme was “Putting Your Heart Into It”, and our volunteers sure do that! We highlighted our volunteers who have donated their valuable time to tutor adults with Down syndrome for 90 minutes per week. We showed our appreciation to their dedication and presented them with a nice dinner and certificate. Our students and parents were truly creative in showing their appreciation which included gifts, cards, a recitation by David, and even a great “rap” song from Christopher. Everyone had a great time! Kudos to our awesome ACE tutors! We currently have 13 students and tutors in the ACE program. If you are interested in becoming an ACE volunteer tutor or your son/ daughter would like to become an ACE student, please contact Oralia Lara at olara@dsastx.org. Birdies for Charity Thank you for everyone who donated to the DSASTX through Birdies for Charity! We have raised $5,395 to date! Thanks to your generosity, we qualified for the Top 50 Charities with the opportunity to be a participating charity in the Pro Am tournament at the Texas Valero Open. Because of our eligibility, we received an additional $200! Our Executive Director attended the Pro Am Pairings Party, where she met the team that played on behalf of the DSASTX!
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Calendar Contest Winner! Our Birdies for Charity Calendar Contest Winner is Stephanie Crane! Stephanie was featured in the first ever calendar in 2005 and because she raised the most money for Birdies for Charity, she will be featured in the 2016 calendar. We do this fundraising contest to provide individuals who have already been featured in the calendar another opportunity to show their beauty. Easter Egg Hunt appreciation What a beautiful day for an Easter egg hunt with Elsa! We would like to thank Valero for allowing the DSASTX use of their beautiful facilities, as well as their amazing volunteers who helped hide over 1,300 eggs for the children to enjoy! Also, thank you to Just Add Children who provided our favorite characters! BOOK CLUB & CLUB UP! N We want to give a special thanks to the Progreaw UTSA Voices Club members who do ms! such a great service for us at both our Book Club and Club UP! Book Club Book and Club UP! are Club DSASTX’s newest programs that run all year long. Book Club is held the last 3 consecutive Fridays of the month from 5-6 p.m. at the DSASTX office, and is open to readers on every level. We are reading Aesop’s Fables and would love to have you join us! Participants must be 13 years of age or older. Club Up! runs the last 3 consecutive Saturdays of the month and begins at 10 a.m. Ages 10 and older are welcome. These sessions are held at Dance-Me Studio located on 8037 Pine Brook. Please contact Melania Evans for more information on either of these programs. Playgroup, Kid Connection, Teen Club, Adult Matters, D.A.D.S. – Keep an eye out for postcards in the mail, as well as social media & website updates with details of upcoming activities. NELLIE reddix center The Nellie Reddix Center with Northside ISD provides extended education for individuals between 18-22 years old with disabilities after they have graduated from high school. They currently provide independent living skills and employment ready skills to approximately 300 students. The Nellie Reddix Center hosted a DS Fun Walk on March 27th and chose to raise money for the Down Syndrome Association. Together, they raised $533.50 and had a great time doing it! Our friends Rachel and Steven came by the office to present us with the money they raised. On behalf of the DSASTX and our families, thank you Nellie Reddix Center!! For more information about the Nellie Reddix Center, please contact them at (210) 397-2401.
www.dsastx.org
Special Events
Board Highlight Focus on Board Member Belarmino Castellanos Belarmino Castellanos serves as newly-elected Vice Chairman of the Board of Directors of the Down Syndrome Association of South Texas. He comes to the DSASTX with a background in corporate training, call center Belarmino Castellanos Family management, customer experience, incident management, and food safety. He has served many different positions within the organization including Development Planning Committee, Social Media Committee, D.A.D.S. Core Team, among others. Belarmino is entering his 15th year at Whataburger Restaurants, LLC as the Director of their Restaurant Support Center where he manages the Customer Care Team, QA Hotline, Contact Center, and Incident Management Team.
1st annual family fun DAY SUNday, May 17 The DSASTX is excited to invite you to their 1st Annual Family Fun Day located at Morgan’s Wonderland exclusively for our families and friends. Join us on Saturday, May 17th from 1-6 p.m. for lots of fun! Bring your own sack lunch or support our D.A.D.S group and buy a $5 meal fresh off the grill! No RSVPs needed. Please note: This event is in lieu of the Spring Picnic. audrey’s DAY at the beach Saturday, JUNE 13 An all-day event from 8:30 a.m. till dusk for families of adults and children with Down syndrome at Rockport Beach Park, Rockport, Texas. Activities include fun in the sand and surf, kite flying, kayaking, face painting, boat rides, and cane pole fishing. One meal will be provided. This celebration is presented by Bill and Jackie Shockley in loving memory of their granddaughter who was born with DS. They wanted a way to give back to the DSASTX for all of the guidance and support they provided to their son Ray, Audrey’s father. The celebration continues to grow each year, and we hope to see you there! SPLASHTOWN Saturday, august 15 Splashtown is located at 3600 IH 35 North, San Antonio, Texas 78219. Check-in is from 10:30-11 a.m. Families must arrive by 11:00 a.m. so that tickets may be purchased – no exceptions. DSASTX will provide free admission for individuals with Down syndrome (ages 0-12) and their siblings (ages 17 and under) OR DSASTX will provide free admission for teens and adults with Down syndrome (ages 13 and up) and one friend with special needs. Any additional tickets for parents, friends, adult siblings, and extended family (grandparents, aunts, uncles, cousins, etc.) will be charged the group rate admission. You MUST RSVP to Melania Evans at (210) 349-4372 or mevans@dsastx.org no later than Monday, August 10. Don’t forget your towel and sunscreen!
After graduating from the University of Texas at Austin, Belarmino worked at the DoubleTree Hotels, Motorola, Luby’s Cafeterias, until his final stop at Whataburger, where he met and married his lovely wife, Mary Ann. As a blended family, Mary Ann and Belarmino have five children, Roma (19), Julia (16), Esme (15), Coco (9), and Luke (3). Many of you have met Luke at the Buddy Walks or when Belarmino and Mary Ann spoke at our first annual HUGS Gala in 2014. Belarmino had previously served on boards with various PTAs, the Girl Scouts of America, and soccer leagues in Corpus Christi, including serving as a volunteer for Public Television, Public Cooperative Radio, Meals on Wheels, Project Mentor, and Habitat for Humanity. Belarmino and Mary Ann keep busy helping the kids get to choir practices, gymnastics, PTA meetings, and playdates. Their family stays active in the community of San Antonio, and they love to take weekend trips to Corpus Christi, Austin, McAllen or Houston to visit with old friends and family. They have been blessed with an amazing support system and take every opportunity to spend time with friends and family. Belarmino’s involvement and love of the DSASTX followed the arrival of Luke, who was diagnosed five weeks after his birth with Down syndrome. Belarmino and Mary Ann are determined to help make a difference in the lives of people with DS through education, awareness, creation of opportunities, and research. It is his hope that the DSASTX will continue to grow, both in size and service, so that we may meet every need of our families. He is grateful for the opportunity to serve on the board and do a small part in making a difference in the lives of others.
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Keeping Up With Downs
Outreach
We would like to welcome our newest families to the Down Syndrome Association family!
San Antonio Buddy Walk® Receives National Advocacy Award
If you know someone who has a child or family member with Down syndrome, please let them know about the DSASTX and the services we provide. We’d be happy to reach out to help in any way possible! Lorina Villagomez, parent of Anselmo Robert & Thelma Smith, parents of Robyn Iman Rahimi, sibling of Farid Maria Arias, parent of Juan Silvia Aguilar, parent of Destiny Nereyda Dura, parent of Maximus Angelica Fitch & Juan Chavez, parents of Ana Noreen Hartman, parent of Joseph Mary Jane Puente, parent of Emelia Joseph & Laura Lopez, parents of Liliana Rebecca Ramirez, parent of Nehemiah Elizabeth Cruz, parent of Frank Jennifer J. Salazar, parent of Luis Rodrigo & Shirley Diaz-Caballero, parents of Addison Armando Gauna, parent of Jose Steven Marquez & Diane Garcia, parents of Celine Heidi Spencer, parent of Samuel April Flores, parent of Arianna Midori Robles & Jose Coronado-Torres, parents of Christian Nadia Buelna, parent of Luna Lawanda Owens, parent of Brandon Stan & Julie Teel, parents of Elliott Shari Saldivar, parent of Cade Shannon Fyfe & Rey Rangel, parents of Raeleigh Kelly Rodriguez, parent of Molly Norma Gomez, parent of Benito Melissa Godinez, parent of Luke Gerard & Tabitha Kolodejcak, parents of Lyric WORLD DOWN SYNDROME DAY We celebrated World Down Syndrome Day on March 21st at the HEB Plus off Bandera and 1604. Thanks to our continued partnership with HEB, we introduced a new, reusable tumbler which features artwork by 2-year-old Miss Adrienne Alvarado. With help from her mom Lori and Auntie Amanda, Adrienne created a blue butterfly with her feet. As many of you know, blue and yellow butterflies are one of the recognized symbols of Down syndrome awareness. Very creative, Adrienne! The tumblers are available at select HEB stores around the area and a portion of the proceeds will be given to the DSASTX! Once again, thank you, HEB!
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Terri Mauldin, Stephanie Crane and Becky Switalski The National Down Syndrome Society (NDSS) is pleased to recognize the Down Syndrome Association of South Texas (DSASTX) with the NDSS Buddy Walk® of the Year Champion of Change Award. The Buddy Walk® program is the premier advocacy event for Down syndrome in the United States and is also the world’s most widely recognized public awareness program for the Down syndrome community. Established in 1995, the walks have grown from 17 nationally to over 250 walks in 2014. The Buddy Walk® has been ranked in the top 30 fundraising events nationwide for money raised, number of participants and best series event since 2008. DSASTX received the award at the Buddy Walk® on Washington, the annual NDSS advocacy event in Washington, D.C. Over 150 people from across the country gathered together to advocate for legislative priorities that positively impact the lives of people with Down syndrome and their families. The event also included an award ceremony, at which DSASTX received their award. The first Buddy Walk® in San Antonio was held in 2001. It raised about $1,700 and had roughly 200 participants. Terri Mauldin, now the Executive Director for DSASTX, chaired the event in 2002 and the numbers started to grow. By 2014, when DSASTX held their 14th annual Buddy Walk®, there were more than 6,000 participants, 275 registered volunteers and more than $200,000 was raised for DSASTX and NDSS. The San Antonio Buddy Walk® ranked 4th in participants attending and 15th in money raised among all the Buddy Walk® events in the country in 2014! Terri and her daughter, Stephanie, were excited to accept the award on behalf of the DSASTX in Washington, D.C. Terri and Stephanie, along with other advocates from Texas, also participated in the Buddy Walk® on Washington Advocacy Day at Capitol Hill on Wednesday, April 15th. They met with the staff of Senators and Representatives representing the State of Texas. The issues that were discussed were the Elementary and Secondary Education Act (ESEA), previously known as the No Child Left Behind Act and the NIH allocation of funding for research on Alzheimer’s and Down syndrome. We thanked them for their prior support of the ABLE Act and in helping to get it passed. It is now in the hands of the legislation at the state level. We also asked the Representatives to join the Down Syndrome Caucus led by Congresswoman Cathy McMorris Rodgers.
www.dsastx.org
Mark your calendar now! DSASTX Mini-Conference May 30 • 8 a.m.-1 p.m. University United Methodist Church
5084 DeZavala Rd. San Antonio 78249 Lunch will be served at noon Please RSVP to mevans@dsastx.org
Contributions
We sincerely appreciate the following people who have so generously donated to the Down Syndrome Association. Your contributions help us offer a variety of programs for the members of our organization. Alexis Pinkard Arnold Letim AT&T United Way Employee Giving Campaign Berniece T. Gibson Carter Tannehill Caterpillar Inc. Charity Trust Center for Maternal-Fetal Care Debra Albright Elna Jeanes Frank Spinner Gap Inc. Glenn Cook Helen D. Cates James M. Miller Janice Troy Javier & Mary Carrillo Jennifer Wineman Joseph Hernandez Kathy A. Carrizales Keller Williams Legacy Kendra Scott Design, Inc. Linda Behrens Lydia Beach Martin Flores Michelle L. Pettit Polly Toepperwein Rick Villarreal Rick Wyckoff Stan Teel Stephen Ramseur Terri Mauldin The Benevity Community Impact Fund The GE Foundation Trinity Title of Texas, LLC TRUiST Virginia Rios Walter Bain William Cade
Who We Are mission statement The DSASTX's mission is to provide support and services to children and adults with Down syndrome and their families.
EXECUTIVE DIRECTOR Terri Mauldin
(210) 349-4375 • tmauldin@dsastx.org
DEVELOPMENT ASSOCIATE Kelly Toepperwein
(210) 349-4372 • ktoepperwein@dsastx.org
Special Events Coordinator Melania Evans
(210) 349-4372 • mevans@dsastx.org
Bookkeeper Cynthia Smith
(210) 349-4372 • csmith@dsastx.org
adult continuing education director Oralia Lara
210-349-4372 • olara@dsastx.org
BOARD OF DIRECTORS Chairperson – Edward Leos Vice Chairman – Belarmino Castellanos Secretary – Stephanie Anderson Treasurer/Finance – Christy Anderson Member at Large/Self Advocate – Jessaca Bond Member at Large – Trisha Cooke Member at Large – Lisa Drozdick Member at Large – Lamont Jefferson Member at Large – Scott McLean Member at Large – Judith Moening Member at Large – Rocio Rojas Member at Large – Barbara Samfield
www.facebook.com/downsynstx www.twitter.com/downsynstx www.pinterest.com/downsynstx
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Nonprofit Org U.S. Postage paid San Antonio, TX Permit No 1126
Down Syndrome Association of South Texas 2800 NW Loop 410 San Antonio, TX 78230 RETURN SERVICE REQUESTED