Volume 20 Issue 60 July August 2012

The Learning Program Comes to KC

DADS Corner/ Counseling Program              2‐3                          

Community Group Pages                4‐5 

Talking About Disability/Social Media        6‐7  

DS in the Spotlight/CVS Grant 

Auditory Processing Disorder/             8‐9 

ARC Vo ng/Memorial Dona ons 

Alopecia/Smart Start/DS Seminar           10‐11 

Series Flier 

Seminar Series/DADS Fishing/           12‐13 

Group Hug/IEP Kit/Lending Library 

First Downs for Down Syndrome            14‐15 

Are You Ready to Step Up for Down Syndrome? The Learning Program (TLP) was created to bridge the gap between re-

search and practice. Although researchers continue to discover more about how people with Down syndrome learn, their insight has been slow to filter to parents and teachers. The program focuses on parents as first-teachers for their children, bringing the fruits of research into practice. Knowledgeable parents can work more effectively with their children and give them a jump-start on education. The program also prepares parents to serve as capable advocates for their children in the educational process.

Saturday, October 27th Arrowhead Stadium

Join us for one of the largest cele-brations for individuals with Down syndrome in the world!

Online registration is now open at

stepupfordownsyndromkc.org

TLP complements formal instruction in literacy and math. It also has occupational and speech therapy components. DSF has partnered with educators, research-ers, therapists and administrators to de-velop a program that uses effective teach-ing strategies and customized materials to support parents, teachers and children in the educational process.

Parents enrolled in the program will attend monthly instructional sessions to help them teach literacy and numeracy skills. Children also attend their own instructional sessions which focus on skill development for literacy, math, language and fine motor skills. Parents receive materials at each session to work with their children on at home or at school.

TLP was founded by the Down Syndrome Foundation of Orange County. Over 5,000 families, teachers and therapists from across the United States and abroad access materials. DSG is pleased to become a Learning Pro-gram Partner as we know this will help many children with DS acquire vital skills to be successful in school and life.

Classes will begin in September and run through May. Sessions will be held at the DSG office on the second Saturday of each month from 9:00 AM –10:30 AM. There is a $200 enrollment fee to participate and we can serve 15 children with Down syndrome between the ages of 4-6 years of age. Session participation is available on a first come, first serve basis.

Contact info@kcdsg.org to request a Learning Program application with more details.

If you want something, you need to ask for it. Nobody is going to just give it to you. I have found this to be especially true with my son Brock who is 14 and has DS. When Brock was born, he had an AV canal heart defect. I won-dered what God had in store for us for the rest of our lives. I remember asking God to give the doctors the skills to repair his heart and make him healthy. Our prayers were answered and now he is completely healed and very active. The director of the Lee Ann Britain Infant Devel-opment Center (IDC) visited us after Brock was born. IDC helps children succeed by utilizing a team approach including parents, siblings, spe-cial education teachers and therapists. Early intervention was the single most important de-cision we made to help with Brock’s develop-ment. I spent three days a week with Brock working in therapy together for his first three years. Brock is still friends still with some of his IDC classmates and he sees them weekly at DSG STARS activities. All special needs children have strengths and weaknesses just like you and me. Through our experiences at IDC, we learned that Brock’s strength was his athleticism. He was first in his class to pedal a trike and was good at climbing, kicking, and gymnastics. When he moved to preschool at Mize Elementary, they were very surprised at how well he behaved and how attentive he was. IDC prepared Brock well to enter school. Not all things you ask for turn out as you want. In first grade we asked for Brock to ride the school bus with his sister Bretlyn. He had been riding the small bus with a helper, but we thought he could handle riding with the bigger kids. Unfortunately, the bus driver had a real attitude about special needs kids and constantly gave Brock reprimands for his behavior to the point he was going to have to ride the small bus again. My wife is a special education teacher so she knew what our rights were. She requested a meeting and we quickly hammered out a so-lution that was acceptable to all parties. If you have any issues with your child’s education, don’t be afraid to request a meeting with the school to discuss your concerns. You may be surprised how willing they are to work with you if you just ask! Brock LOVES sports whether it’s playing on a team, and playing sports video games. At five, we signed him up for soccer and the coach assumed he would just sit there, not play and watch the action. Well, that’s just not Brock. He ran all over the field chasing the ball just like everyone else. Unfortunately, he wasn’t always successful at kicking the ball so he would grab or tackle another player and then kick the ball.

This didn’t go over too well with other parents and the coach asked Brock to leave the team. This was probably more disappointing for me than Brock. Luckily, kids bounce back quickly and that’s just what he did. We moved on to an inclusive T-ball team and found one with an assistant coach who had a daughter with DS so he was very accepting. Brock had an absolute fantastic time playing ball that year. Brock outgrew T-ball so we moved to machine pitch. We were afraid Brock couldn‘t react fast enough for the ball so we found a coach pitch league through Johnson County Parks and Rec. Brock loved it and he played for three years. Brock was small in stat-ure so they allowed him to play until he was a 5th grader and then he finally outgrew that league. Brock then played Upward Basketball at Lenexa Baptist Church and Maranatha Academy. He even hit a three pointer this year. Brock also loves playing Challenger Football with many of his STARS friends as everyone scores a touch-down. Brock also played in the band and took pictures for the school yearbook. The last two years Brock has thrown the discus and shot put for the track squad. As Brock enters high school in August, I look forward to seeing him grow up and participate in a variety of activities with his friends. He plans on playing percussion in the band and being on the bowling and track teams. I encourage you to find your child‘s strength and nourish it. Don’t be afraid to ask questions and expose your child to a variety of opportuni-ties so you can find something he/she enjoys doing and can excel at.If your child wants to try something, ask around until you find a good fit. You would not believe how much joy and hap-piness this will bring to your child, his/her sib-lings, and especially you as parents. Submitted by, Ross Opfer

Disclaimer:  The  informa on  provided  is  done  so 

through a variety of  sources  including names provided 

by members  of  DSG,  networking,  referrals  by  profes‐

sionals,  other  agencies, mail  adver sements,  etc. DSG 

cannot  a est  to  the  quality  or  qualifica ons  of  the 

individuals  or  organiza ons  described.  We  encourage 

you to be a wise consumer and ask ques ons in order to 

make your own  independent evalua on of u lizing the 

services  described.  We  share  informa on  about  re‐

search projects but in doing so, it is not reflec ve of any 

type of endorsement.   

DSG Mission The Down Syndrome Guild of Greater 

Kansas City is a 501 c 3 nonprofit  

organiza on whose  

mission is to provide support and 

 resources for individuals with  

Down syndrome and their families.  

DSG seeks to provide the en re  

community with informa on and  

educa on to broaden awareness and 

foster posi ve a tudes regarding  

people with Down syndrome.    

Connec ons is a bi‐monthly publica on of 

the Down Syndrome Guild of Greater Kan‐

sas City. Please contact the office at (913) 

384‐4848 if you have any ques ons about 

the contents of this newsle er or would 

Kris n Bechtel 

Kansas City, MO 

 

Jo Ann Butaud 

Shawnee, KS 

 

Brian Cowley 

Weatherby Lake, MO 

 

Terry Lee 

Overland Park, KS  

Veronica Manzano 

Kansas City, KS 

 

Travis Palangi 

Olathe, KS 

 

Joe Roos 

Kansas City, MO 

 

Sco  Thompson 

Leawood, KS 

 

Doug Wager 

Kansas City, MO 

 

Tom Wagstaff 

Mission Hills, KS 

 

Contact group leader, Yinka Perry, at dsg.aafriends@gmail.com for infor-mation about upcoming events. We look forward to seeing you at Afri-can American FRIENDS events in 2012.

We are looking for someone to take over this community group. For infor-mation on how to become a group leader or for information about our group please contact info@kcdsg.org.

African American Friends 

Do e FRIENDS 

Calling all Olathe families! DSG is seeking new leadership for an Olathe Community Group! Please contact our office at info@kcdsg.org or 913-384-4848 if you are interested in leading or co-leading an Olathe based group.

DSG will provide administrative and funding support to the group and assist the leader in reaching out to families and serving them.

FRIENDS of Joplin The  DSG  proudly  serves  a  large  

geographic  area  and  therefore  provides 

administra ve  support  and  funding  to  the 

adver sed community groups to help meet 

our  members  needs  in  their  immediate 

communi es.    Please  feel  free  to  a end 

any event  listed on these pages, even  if  its 

outside  your  area.  DSG members  are  en‐

couraged to a end group mee ngs in their 

area but may  also  choose  to  a end other 

groups  if  the  topic ma er/event  interests 

them. Please contact us at  info@kcdsg.org 

if you would like to suggest a new group 

FACES of Olathe 

Lawrence Topeka Friends 

It is time for our annual family pic-nic on Saturday, July 28th from 11 a.m. to 1 p.m. It will be at Wy-andotte County Lake, 91st Leaven-worth Road, SHELTER 10. We will cook hamburgers and hot dogs and supply drinks, and paper products. We would like each fam-ily to bring a side item or dessert to add to the lunch. Bring some chairs and outside games if you want. Please RSVP to Becky Mesler at 913-788-9013 or 913-940-8512 or at abecky529@kc.rr.com.

CONECTANDO AMIGOS LATINOS

El 20 de julio se reúnen en la oficina del DSG de 6:30 PM-8: 30 PM (10200 East 75th Street # 281 Shaw-nee Mission, KS 66204).

Si usted tiene alguna pregunta o desea confirmar su asistencia por favor comuníquese con Yadira en yadis7@yahoo.com o por teléfono al (913) 261 a 9546

O póngase en contacto Brenda en via-quintara@yahoo.com o por te-léfono al (816) 278-0219.

Eastland FRIENDS 

Johnson County FRIENDS 

Watch for details about upcoming Meetings ! To be added to the JOCO friends Email list please contact dsgjo-cofriends@gmail.com .

Please join your JOCO friends at the DSG Family Carnival on June 2nd at Shawnee Mission Park!

We are always looking for new families to join JOCO Friends!

July 7th at 10:30 am will be a meet-ing for Teens and Adults. Come join us for a great time making drums for a future meeting so that you can help teach the younger kids when we are all together again. Refreshments will be provided.

August 4th at 10:30 am we will have a speaker from MetLife to discuss fi-nancial planning for families with chil-dren with special needs. We will also have some fun activities for the kids to do during this time. Refreshments will be provided.

Both meetings will be held at Through the Roof (831 Sycamore in Joplin). Please RSVP to Alicia Hammer (417)499-4614 or alihammer@sbcglobal.net

LTF is in the process of planning their annual picnic. Watch your mailboxes and emails for more information about this fun family friendly event.

To be added to the email list or for more information on LTF friends please contact Anne Martinez at richard-anne@sbcglobal.net or 785-354-8243

Rural Missouri FRIENDS 

Mom’s Bowling Night! Meet us Tues-day, July 17th at 7:00pm for a night of bowling at Strikerz Entertainment Center (18900 E. Valley View Pkwy, Independence). Eastland Friends will pay for bowling and shoe rental. RSVP to eastlandfriends@gmail.com Ice Cream and Splash Play on Sunday, August 12th at 3:00pm at the McCoy Park Spraygrounds (800 N. Bess Tru-man Pkwy, Independence). Ice Cream and Popsicles provided RSVP to eastlandfriends@gmail.com We are updating our contact list. If you are not currently receiving emails and would like to be added to our list, contact eastlandfriends@gmail.com

St. Joseph Comm. Group 

Saturday July 28th in Wamego 6-7 pm Pizza Party at the Wamego City Park in the Train Depot shelter (The park is 2 blocks east of downtown Wamego. The Depot shelter is on the north side of the park). 7pm-?? Pool Party at Wamego City Pool (the pool has been reserved after hours for a private party for Flint Hills Down Syndrome Families.) For more information, Check us out on Facebook (Flint Hills Families Affected by Down Syndrome) or contact Briana at 785-456-2137 or email bnelson@ksu.edu

Flint Hills Support Group 

Tiffany Springs Water Park Outing on Saturday, July 7th (9400 Congress Avenue Kansas City, MO 64`53) Park hours are 11 AM and will close at 8 PM. Don’t forget to bring towels and sunscreen! Meet at entrance at 11 AM (PLEASE let me know if you will be arriving later). RSVP by July 5th, and you can receive FREE entrance for your entire family!

The park has slides, lazy river, kid’s fun area, spray ground, 50 meter pool, low and high diving boards, vortex, and life jackets. Come join us for our most popular event of the year!!

Moms Night Out Thursday, August 2 at Nick and Jake’s (6325 Lewis St. Parkville, MO). Dads Night Out Friday, August 3 at Brew Top (8614 Boardwalk Kansas City, MO) at 6:30. NLB’s will pay $10.00 towards each mea for these events! You need to RSVP by Monday, July 30 so we can make reservations.

RSVP to kdkb@plubells.com or 816-792-4671. Like the Northland Buddies Group on Facebook to stay in the loop between meetings). You can also join the google groups list by going to: http://groups.google.com/group/northland-buddies-kc 

Northland Buddies 

DADS  

DADS FAMILY FISHING DAY Sun-day June 24th, 4pm to 8pm Dinner served at 5:30. At James A. Reed Memorial Wildlife Area, Prairie Hal-low Lake, bring the whole family and join us for food, fellowship and fishing! What to expect for the day: Concrete walkway, great for first time fishers Fishing license required for those 15+ If you are planning to only help your little one fish you don't need a license DADS provides picnic dinner

Please RSVP so we have a count for food. The lake is approximately 2.7 miles south off of Hwy 50 on SE Ranson Road. (traveling east on 50 the exit will say RA /Todd George/Greenwood ) Look for the DADS signs.

Thursday July 19th 6:30 to 9:30 DADS Bowling at Strikerz 18900 East Valley View Parkway Independ-ence, Mo 64055 DADS and the DSG will pay for Two Games and Show Rental.

RSVP to info@dadskc.org

Plan to join St. Joe Friends and at-tend the DSG Carnival on June 2nd at Shawnee Mission Park! Watch your mailboxes for invita-tions from the DSG.

For information on St. Joe Friends please contact Renee Sherman grover_rar@hotmail.com or 816-232-7238 or Stephanie Anderson sl9anderson@hotmail.com or 816-387-8770 to learn more!

Look out for a postcard in your mailbox about upcoming events!

Eastland FRIENDS Group

Talking With Your Child About His/Her Disability Despite numerous resources and information available to parents about diagnosis and treat-ment for a child with a disability, there are few resources available to help parents respond to questions from the child themselves. Children need answers to the very same questions a parent needed answers for, and with knowledge comes confidence.

Without accurate information, children often construct explanations on their own which can be filled with false beliefs and misconceptions. Factual information allows a child to under-stand the struggles, learn about the nature and treatment options that he or she may face and can bring relief rather than guilt or shame. There is no right time or right conversation to have with a child about his or her disability, but in the context of age-appropriate discussion the child can learn about his or her diagnosis.

Adapt the Information to the age of the child

Young children are concrete in their thinking and need short, simple facts related to their immediate world. It is helpful for parents to talk about things in terms of a specific time, from event to event. Once a child’s curiosity is satisfied, they may quickly change topics or

ask another question. By age 8 or 9, children can understand specific information and are more interested in sophisticated and technical explanations. Adolescents seek understanding for more abstract issues about the long-term impact of their disability. It may be helpful to allow the child time to speak with a professional in order to ask questions that he or she may not want to voice in front of parents.

Ask for the child’s point of view

Start the conversation by getting the child’s point of view on the disability and asking what he or she notices about behaviors, frustrations, or problems related to the disability. Act as an interpreter for the child, but use the actual terms of the diagnosis to help demystify it and prepare the child for understanding the term when others use it. The child may be relieved to learn the problems or frustrations he or she is having in school are not their “fault.” Parents and children should work together and create a plan of action for addressing the struggles in the future.

Have more than one conversation

Talking about a disability should be an ongoing series of discussions building upon information, emotions, and questions from previous conversations. Children will need varying lengths of time to hear what is said and process the information. As they grow older, they will process information differently and may have more questions which constantly shape the conversations about a disability.

Practice telling others

Both parents and children will need to decide their own comfort level about who they want to discuss the disability with and how much detail they want to share. This is a personal decision and may change throughout the child’s lifetime. Talk with your child about how much to share and how to respond to questions. Role-playing situations can help the child become more comfortable and anticipate questions or reactions from family, friends and teachers. There is no absolute right way to discuss a disability with a child; however parents have the opportunity to help “normalize” the disability and provide a safe place for the child to ask ques-tions, voice concerns and frustrations, and begin to understand. Parents should not be the only support to answer a child’s ques-tions, and in the instance a parent does not know any answer they should utilize medical professionals who know the child. Teaching children how to articulate their concerns and questions, and helping them connect with others who can answers this questions develop self-advocacy skills that will benefit the child at all stages of their lifetime.

Information adapted from “Talking with kids about ADHD, Anxiety and Learning Disorders” by Robin F. Goodman, Ph.D., A.T.R. –BC, Clinical Assistant Professor of Psychiatry at NYU School of Medicine. March/April 2000 issue of Child Study Center.

Are you following DSG on facebook and twitter? We post great information on research, legislative action alerts, medical issues related to

DS, success stories, event updates, fundraisers, free offers and more!

DSG Receives $1,500 CVS Caremark Community Grant DSG is pleased to announce that we received a $1500 All Kids Can grant from CVS Care-mark to host Music, Movement and Sign Language classes for 0-5 year old children with Down syndrome. The All Kids Can program seeks to increase access to early intervention programs that help children develop strong foundations early in life, thereby reducing barriers and creating greater opportunities.

“We are committed to making a positive impact in the communities where we live and work and the CVS Caremark Community Grants program does just that by supporting organizations that truly make a difference in the lives of children and families,” said Den-nis Palmer, SVP CVS/pharmacy West Division Operations. “We are proud to support the work that DSG does in the community and we look forward to working with them in the year ahead.”

DSG will host two 6 week Music, Movement and Sign sessions in two locations. Sessions will be held in the fall and winter and take place at the DSG office or in the Northland area.

Down Syndrome in the Spotlight It has been wonderful to see many corporations embracing people with Down syndrome and using them as models in their marketing materials recently. It’s important that the DS community reach out and thank these corporations for celebrating peo-ple with DS and bringing greater awareness to and acceptance of those who live with the condition. We invite you to reach out and thank JC Penney, Target, Toys R Us and People Magazine for their support. You can do this by visiting their websites and clicking on the consumer feedback link or by stopping in a store and telling a manager how much you appreciate the exposure.

Target and JC Penney ads have featured several children with Down syndrome!

Tim Harris was recently named a People Magazine’s Hero Among Us. With the help of his parents, he operates a restaurant called Tim’s Place in Albuquerque, NM. Tim has 20 employees and a strong customer base who love his food and the FREE HUGS he shares upon request.

Visit timsplaceabq.com to learn more.

The Toys R Us Differently Abled Guide has featured several models with Down syndrome in past years. The guide is re-leased each year before the holidays and identifies toys that are user friendly for children of all abilities.

Learn more by visiting toysrus.com

Want to get your loved one with Down syndrome out in front of casting agents? Visit Down Syndrome In Arts in Media website at dsiam.org to learn more.

 Auditory Processing Disorder and Learning

• Delayed speech • Persistent articulation errors • Abnormally soft, loud, flat, formal, or “pedantic” speaking

voice • Difficulty conducting casual conversations • Difficulty reading and or spelling due to problems dis-

criminating word sounds • Difficulty following oral directions • Difficulty organizing behaviors • A tendency to appear quiet, distracted, or off topic dur-

ing group discussions or to interrupt or blurt out answers • Long delays before responding to questions or instruc-

tions

• Preferences for nonverbal tasks or a markedly higher performance IQ than verbal IQ

• Difficulty taking notes • Worsening performance in higher grades as oral instruc-

tion load and receptive language demands increase • Difficulties with inference, abstraction, and figurative

language • Difficulty hearing in the presence of background noise • Difficulty understanding what’s said • A tendency to ask for restatement or clarification, or re-

peatedly saying “what?” or “huh?” • Marked difficulty understanding speakers with particular-

ly high or low-pitched voices or with prominent accents.

Almost every school activity, including listening to teachers, interacting with classmates, singing along in music class, follow-ing instructions in physical education, etc, depends on the ability for students to process sounds and have a strong auditory system in learning. But what happens if this auditory system has deficits? Can a child still learn?

Does my child have Auditory Processing disorder?

Auditory Processing (APD) is a very common learning disability and affects about 5% of school-age children. Auditory Pro-cessing can present itself with many different symptoms and behaviors. Often these behaviors resemble those seen with other learning challenges, like language difficulties, attention problems and autism. Most children with auditory processing difficulties show only a few of the following behaviors. No child will show all of them. However, any child who displays sever-al of these symptoms should be carefully evaluated for auditory processing disorder.

Symptoms and behaviors indicating an Auditory Processing disorder may be present:

How does Auditory Processing affect my child’s learning?

Children with Auditory Processing Disorders have difficulties distinguishing the sounds or phonemes in spoken words, espe-cially those in complex words and sentences. This is referred to as Auditory Discrimination Deficits. If a child has difficul-ties discriminating sounds in language, then words will sound unclear or distorted as well as many will sound alike. This in turn will affect a child’s development of language skills.

They may have trouble speaking and listening, because of problems learning basic grammar and word meanings. Many vowel and consonant sounds may sound the same to them, especially when spoken quickly. As a result, not only will they have difficulty hearing the differences between words that sound alike (think, thing, sink, thin) they will also have difficulty understanding the connections between those words and the letters used to represent them.

This is why children with Auditory Processing Difficulties often have trouble with reading and spelling. Since they cannot hear the sound distinctions between words, the rules linking sounds to letters and letter groups can be hard for them to mas-ter. Most children with Auditory Processing Disorder have difficulty hearing in the presence of background noise. This is referred to as Auditory Figure-Ground Deficits. Although the children often hear well enough at home or in quiet environ-ments, they may appear hard of hearing or even functionally deaf in noisy environments such as school.

In the classroom, a child with Auditory Processing Deficits will have great difficulties staying focused on a listening task. This is referred to as Auditory Attention Deficits. If a teacher is giving a lecture, for example, the student might listen in for a few minutes but then drift of and daydream missing out on significant amounts of information.

Students with Auditory Processing Challenges have great difficulties remembering information given. This is referred to as Auditory Memory Deficits. If the teacher says, “get a piece of paper and a pencil out of your desk and write down your spelling words,” the student may get confused because there are too many commands at once. Impairments in the auditory memory deficits can severely weaken not only long-term memory but also language development and comprehension.

How can a child with Auditory Processing Disorder get help?

The sooner a child with Auditory Processing Disorder is given proper teaching strategies, particularly in the very early grades, the more likely it is that they will have fewer or milder difficulties later in life. These students will need a very struc-tured, systematic, cumulative, repetitive and multisensory teaching method such as the Orton-Gillingham approach. By

Auditory Processing Disorder and Learning

Memorial Donations

Robert Nash pictured with his family .

DSG is always saddened to hear of the loss of a loved one who is a mem-ber or relative of a member. We are honored when a family thinks of us during a difficult time and requests that donations be made to the DSG in memory of their loved who has passed.

DSG recently received memorials in honor of the following individuals:

Robert Nash Philip Weide Raymond Brudin Lola Lynde

We extend our deepest sympathy to these families on their loss.

using a multisensory approach the student will be able to learn using the visual and kinesthetic modalities while simultane-ously strengthening the auditory channels.

The best learning environment for a student with auditory processing is always one-to-one with very minimal distractions and outside noises. Students who have severe auditory processing disorder may need an intensive training program to catch up and stay up with the rest of their class. During this intensive training, students will overcome many reading, writ-ing, spelling and comprehension difficulties and learn strategies that will last a lifetime. Teachers and parents both need to remember that Auditory Processing Disorder is a real condition. The symptoms and behaviors are not within the child’s control. Children with Auditory Processing Disorder are not being defiant or being lazy. A child with Auditory Processing Disorder can go on in life and become just as successful as other classmates.

Karina Richland is the Founder of Pride Learning Centers, located in Los Angeles and Orange County. Ms. Richland is a certified reading and learning disability specialist. Ms. Richland speaks frequently to parents, teachers, and professionals on learning differences, and writes for several journals and publications. You can reach her by email at kari-na@pridelearningcenter.com or visit the Pride Learning Center website at: www.pridelearningcenter.com

We’ve Got the Power! Make Your Mark in 2012! Election Day 2012—it’s closer than you think! In this time of rapid change and challenges at all levels of government, the importance of action and engagement in the political process by people with I/DD, their families, and everyone who cares about our issues, has never been more important.

The Arc is pleased to provide resources for advocates and community partners for the upcoming 2012 elections. As people who care about the dignity, civil rights and ac-cess for people with I/DD at all levels of society, it is our role to promote civic re-sponsibility and participation in our de-mocracy.

The Arc’s “We’ve Got The Power!” cam-paign is meant to provide support to am-plify the voice of people with disabilities as active participants in the political process, and in their communities.

Through partnerships with Nonprofit VOTE, a national, nonpartisan organization that partners with America's nonprofits to help the people they serve participate and vote, and SABE’s Project VOTE, The Arc is offering access to webinars and other ma-terials for advocates and members across the country. Information is available to assist advocates in:

Voter Registration—information on how to register in your state, as well as data on limitations for people with I/DD, is provid-ed.

Voter Education—voters need to be up to date on the issues of importance in this election season. Information on what is-sues will impact people with I/DD and their families is included.

Candidate Education—candidates for elected office, at national, state and local

levels, need to understand the importance of issues that impact people with I/DD and their families. The Arc is providing talking points and data for use when communi-cating with candidates.

Voter Mobilization—being registered and educated about the issues isn’t enough—we have to get to the polls! Information on early voter, absentee voter, and polling place access will be provided.

The Arc encourages everyone to get involved this election season by going to www.thearc.org for ongoing infor-mation and support.

Alopecia and Down Syndrome Alopecia areata is the term used to describe patchy hair loss which is not due to infection or drugs. The bald patches have distinct borders, with no hair thinning in other areas of the scalp. It is believed to be due to an autoimmune process, meaning the body is making antibodies against hair follicles. People with DS are more prone to autoimmune diseases, such as diabetes, hypothyroidism and celiac disease. Alope-cia areata is more common in people with DS, occurring in 5 to 9% of the population (compared to 1 to 2% of the general population). A gene implicated in the cause of alopecia areata has been found on the 21st chromosome so that likely explains the increased incidence.

Alopecia is highly unpredictable. People with alopecia can have several episodes of hair loss and regrowth during their lifetime. The hair regrowth can be partial or complete, or there may be no regrowth at all. In most people, hair will eventually regrow to some extent within one year. However, a small percentage of people can develop chronic alopecia. In some cases, the hair loss will cover the entire scalp, which is called alopecia totalis. In a very small percentage, hair loss can occur all over the body, which is called alopecia universalis.

There is no cure at present for alopecia; treatment is currently aimed at helping hair regrowth, but it can-not stop the spread of hair loss. The first line of treatment for adults and teenagers is injection of cortico-steroids into the bald spots, with the goal of suppressing the immune reaction causing hair loss. This is not used for children due to the pain involved. Regrowth can be seen in 4 to 8 weeks, and treatment is repeated every 4 to 6 weeks up to a maximum of 6 months. The application of steroid creams are inef-fective. There has been some success with hair regrowth with topical applications of minoxidil and an-thralin. There are newer agents being tried in clinical studies such as diphenylcyclopropenone and dinitro-chlorobenzene, but are not yet commercially available.

Posted on Dr. Len Leshin’s website on medical issues in individuals who have Down syndrome.

In order to accurately diagnose alopecia areata, three things are needed: An educated physician, blood tests, and a brief

clinical history. Visit your primary care physician for screening and diagnosis.

DSG Partners With Pujols Family Foundation DSG is pleased to announce that we will be partnering with the Pujols Family Foundation (PFF) as they ex-pand their service delivery beyond the St. Louis area. Albert and his wife Dee Dee have deep ties and we are excited to enhance our services with their support. Todd Perry, Executive Director of PFF said "The Pujols Family Foundation is excited about the new oppor-tunity we have to serve the wonderful families in Kansas City. We have been extremely blessed to offer meaningful and impactful events and programs to the Down syndrome community in St. Louis. The PFF looks forward to a partnership with the Down Syndrome Guild and expanding our vision and services in Kansas City."

Order your copy today by visiting specialeducationadvisor.com/store/special-education-iep-success-kit/

First Downs for Down Syndrome teams with the Kansas City Chiefs Offensive Line to raise money for the Down Syndrome Guild, the Down Syndrome Clinic at Children’s Mercy Hospital and other Down syndrome organizations. A number of fundraising events are held each year to raise money and provide awareness of Down syndrome and the services of DSG and the Down Syndrome Clinic. Area Corporate Sponsors also support First Downs for Down Syn-drome by donating money based on the number of first downs the Chiefs score in the season! We thank them for making a huge impact on our organization. For information regarding events or other fundraisers, contact Amy Stoll, Executive Director, at 913-722-2499 or email stoll@fdfds.org.

Get your golf team

together & join us at Shoal Creek Golf Club

Monday July 16!

The tenth annual FIRST DOWNS Golf Classic is just around the corner! Mark your calendars for Monday July 16, 2012 at Shoal Creek Golf Club– 8905 Shoal Creek Parkway, KC MO 64157. We’re excited to be at Shoal Creek again this year!

Gather your team, clubs and the sunscreen- as you’ll enjoy a great day on the course. All golfers will receive a Nike pewter grey, golf hat, “fun” drink holes, snacks, putting contest, dinner, silent auction and so much more!

For further information, please visit our website at www.fdfds.org or call our office at 913-722-2499 

Gaining Ground for a Winning Cause…..  

 

 

 

 

10th Annual First Downs Golf Classic!

Monday July 16, 2012

Shoal Creek Golf Club

Take Monday off and enjoy play-ing a full day of golf. Create a foursome with your fellow co-workers, your best clients and or your friends. Lunch, dinner, drink holes, holes contests and so much more...

All proceeds benefit First Downs for Down Syndrome

Step Up for Down Syndrome Walk

& Family Festival!

Saturday October 27, 2012

Arrowhead Stadium– Lot C

!

16th Annual Huddle Time Sports Auction The event was held at the beautiful Mestizo, an Aaron Sanchez restaurant in Leawood, KS. Over $35,000 was raised that evening to support the Kansas City Down syn-drome community.

Special thanks Ryan Lilja, and members of the KC Chiefs Offensive Line for their support of First Downs.

The FIRST DOWNS high school fundraiser is gearing up for the 2012 football season.

Get your high school involved today and help raise money and awareness for individuals with Down syndrome AND your football program. It’s easier than you think!

These schools are signed up for 2012 football fundraiser:

Blue Valley Northwest Mill Valley Olathe East

Hardin– Central Olathe East

Kearney Olathe Northwest

Leavenworth St. Pius X Contact Amy Stoll at 913-722-2499 or stoll@fdfds.org for more

information on how your school can participate.

Dolls & Desserts for Down Syndrome

Sunday September 9, 2012

American Girl Doll Store, Oak Park Mall

Food and Family Fun for all ages!

Join 10,000 supporters for a fun filled Sat-urday for the whole family– lunch, moon bounces, clowns, face painters. The walk is a one mile walk around Arrowhead Sta-dium. Online registration is NOW OPEN at

stepupfordownsyndromekc.org

10200 West 75th Street Suite 281 Shawnee Mission, Kansas 66204 913-384-4848 info@kcdsg.org www.kcdsg.org