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Helping children communicate one Small Step at a time Issue N˚1 - Spring 2011

Inaugural Newsletter Our Inspiration Honoring Marc Small Page 1 A Message from our Founder Amanda Charney Page 2 2011 Events Page 2

How your support is making a difference Learn about our cause & read Celina’s Story Page 3

2010 ASHA Convention The American Speech-Language-Hearing Association held their 2010 national convention in Philadelphia and Small Steps in Speech was there! Page 4 Philadelphia Phillies Charities Small Steps in Speech is awarded a grant and attends the annual holiday celebration Page 5

Millersville University’s Try for Speech Rugby Tournament Learn how one Philadelphia area University is “Trying for Speech”! Page 4

Our Inspiration In our Inaugural Newsletter, we feel it is important to pause and share with you our inspiration for the work we do. Staff Sgt. Marc J. Small was a Special Forces Operational Detachment-Alpha team medical sergeant assigned to Company A, 1st Battalion, 3rd Special Forces Group (Airborne) in the United States Army. Suddenly, on February 12, 2009 Marc was killed in action serving his country in Afghanistan. Marc deployed in support of Operation Enduring Freedom in January 2009 as a member of the Combined Joint Special Operations Task Force-Afghanistan. This was his first deployment in support of the Global War on Terror. Marc was a native of Collegeville, PA and volunteered for military service after being deeply impacted by the tragedy of 9/11. He entered the army in December 2004 as a Special Forces Trainee and worked his way to earning the coveted "Green Beret" in 2007. His Small Steps in Speech Inaugural Newsletter!

Pictured Above: Amanda Charney & SSG Marc J. Small

awards and decorations include the Purple Heart Medal, Army Commendation Medal, Army Achievement Medal, Good Conduct Medal, National Defense Service Medal, Afghanistan Campaign Medal, Global War on Terrorism Service Medal, Noncommissioned Officer Professional Development Ribbon, Army Service Ribbon, NATO Medal, Overseas Service, Parachutist Badge, Combat Infantry Badge, and Special Forces Tab. !

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Year in Review 2010 was a big year for SSIS. Learn about our progress and what is planned for 2011. Page 6

During his time in Afghanistan, Marc treated up to 50 patients a day, many of whom were children. Marc's love of children is why this non-profit organization is the perfect way to remember his sacrifice. Honoring a Hero Marc planned on marrying Amanda Charney, Founder and Executive Director of Small Steps in Speech, when he returned from Afghanistan. Amanda is a school based speech and language pathologist specializing in early childhood development and developmental disorders within the realm of communication disorders. Marc always had a love of children and supported Amanda’s profession. When the heart breaking news of Marc's passing came, Amanda founded Small Steps in Speech in honor of Marc’s memory. This charitable non-profit foundation is the perfect way to keep Marc Small's memory alive and keep him close to our hearts. www.smallstepsinspeech.org

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FOUNDER

For  the  past  ten  years,  I  have  been  a  Speech-­‐Language  Pathologist  and   understand  the  need  for  an  organiza=on  such  as  Small  Steps  in  Speech.   Although  there  are  many  pediatric  founda=ons  addressing  the  varied  needs  of   children  with  disabili=es,  there  is  nothing  quite  like  Small  Steps  in  Speech.    So   oDen  I  have  had  parents  ask,  “When  will  my  child  be  able  to  tell  me  about  their   day  at  school?”    “My  child  is  nine  years  old,  and  I  s=ll  cannot  have  a   conversa=on  with  him/her.”   The  goal  of  this  organiza=on  is  to  help  children  become  beLer  communicators.     Speech  and  language  therapy  goes  so  much  further  than  a  child  not  being  able   to  say  the  /r/  sound  in  words.    Speech  and  language  therapy  assists  children   with  hearing,  feeding/swallowing  disorders,  or  working  with  children  using   assis=ve  technology  as  their  mode  of  communica=on  because  motorically  they   can  not  produce  intelligible  speech.  There  is  a  fluency/stuLering  aspect  of   speech  in  addi=on  to  therapists  working  with  the  cor=cal  areas  of  the  brain  that   affect  language  comprehension,  content,  and  use.    Many  families  seek  private   therapy,  need  addi=onal  services  or  communica=ve  devices  for  their  children   although  many  outside  therapy  providers  do  not  accept  health  insurance  or  the   health  insurance  policy  does  not  cover  or  limits  coverage.  The  out  of  pocket  cost   of  these  services  can  add  up  quickly,  for  instance  speech  therapy  can  range   anywhere  from  $50.00  to  $280.00  for  a  half  hour  session,  some=mes  needed  at   least  one  day  a  week.  This  is  where  Small  Steps  in  Speech  can  help  make  a   difference  by  helping  families  afford  these  services  or  treatments.   Before  Marc  leD  for  Afghanistan  in  January  of  2009,  we  expressed  our   commitment  to  each  other.    I  am  fulfilling  my  commitment  to  Marc  by  making   his  name  live  on  through  this  amazing  founda=on.    When  I  receive  updates  from   the  children  we  have  provided  grants  to  I  know  I  am  fulfilling  a  purpose  in  my   life  and  it  rewards  me  with  hope  and  happiness.   I  am  so  proud  of  how  far  this  founda=on  has  grown  over  the  past  two  years.    I   have  witnessed  first  hand  the  generosity  of  so  many  people  raising  money  for   our  mission  of  helping  children  with  speech  and  language  issues,  and  also  in   remembrance  of  Marc  Small.    I  would  like  to  specifically  recognize  the   generosity  of  Mr.  Reid  and  Mr.  Holden,  who  believe  in  our  mission  and  are   strong  supporters  of  this  founda=on.   I  wish  to  thank  my  family  and  friends  who  have  stayed  by  my  side  throughout   these  first  two  years.  S=ll  to  this  day,  they  support  me  as  I  struggle  to  navigate   this  life  changing  ordeal.  I  am  forever  grateful  for  them.   In  closing,  I  would  also  like  to  take  a  moment  to  recognize  all  of  the  men  and   women  who  are  currently  in  the  armed  services  and  to  all  of  those  who  have   lost  their  lives  to  make  this  na=on  great.  I  think  of  you  and  your  families.     Here’s  to  con=nued  growth  as  a  founda=on  and  to  helping  change  the  life  of  a   child  and  their  family  in  financial  need,  while  honoring  SSG  Marc  Small.         Cheers!

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Yours  in  the  interest  of  children  with   disabili=es,

   

   

   

Amanda  Charney,  MA,  CCC-­‐SLP Founder  &  Execu=ve  Director

www.smallstepsinspeech.org

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2011 Events April 28-29th New Jersey Speech-Language-Hearing Association Annual Convention Visit our booth and learn more about us! Ocean Palace Resort and Spa, Longbranch, NJ Saturday, May 7th MacKenzie & Yates Classic Car Show All proceeds from the event support SSIS. 302 White Horse Pike Atco, NJ 10am - 2pm Sunday, June 5th Take a ride with the South Jer-z Riderz! All proceeds from the event support SSIS. Check out www.smallstepsinspeech.org http://southjerzriderz.com/ Charity_Sponsorship.html for more information. Saturday, August 6th 3rd Annual On Your Marc 5K Run/Walk Join us and 500 others for the 3rd annual 5K race honoring Marc Small. All proceeds from the event support SSIS. www.lowerprovidence.org/events.htm Eagleville Park, Lower Providence Twp, PA Saturday, October 1st Small Steps in Speech Oktoberfest More details to come. Check our website for more information or join our email list for updates! November 17-19th 2011 Annual ASHA Convention Visit our booth and learn more about us! San Diego, CA

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Small Steps in Speech Inaugural Newsletter


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How Your Support is Making a Difference Small Steps, Big Impact...

Small Steps in Speech awards grants on behalf of children with speech and/or language disorders for a wide range of services aimed at improving their communication skills, as well as to other charitable organizations helping improve the communication skills of children. Many of our grants cover speech therapy and communication devices. People who do not have a child with speech and/or language disorders or who aren’t a speech and language professionals often ask us, “Doesn’t medical insurance or the public schools cover that?” Our response: “Not always.” Governed by the Individuals with Disabilities Education Act (IDEA) public schools are required to provide assistance to qualifying children with speech and language disorders in the school setting. Children must be evaluated according to specific criteria in order to qualify for assistance, but not all children with speech and language disorders meet these criteria. Children must score in a certain range on a standardized test and the speech and/or language impairment must affect their education. Children who have learning problems that are primarily a result of hearing or motor disabilities are generally not classified as having a specific learning disability (SLD)   as defined in the IDEA.1 Therefore, these children may need to seek help within a private setting.

children need additional therapy time beyond what is available in the public school setting. Families turning to private practices for their children’s speech and language needs may have to pay out of pocket for these services. Many private and public insurance plans do not cover all speech and language services. For example, many policies will only cover medically necessary treatment resulting from disease, illness, or injury. Many conditions resulting in speech and/or language disorders are the result of what these insurance companies consider developmental conditions and often will not cover services for children with Apraxia, Autism, congenital disorders, stuttering or cognitive impairment. For those families lucky enough to have an insurance policy that does cover speech and language services, insurers may limit the number of therapy sessions per year, place a financial cap on the coverage, may limit services to their innetwork providers only or may not include or limit the coverage of communication devices.

More than one million children in the U.S. public schools’ special education programs are categorized with having a speech and/or language impairment. 2 According to a recent ASHA Schools Survey, 22% of school based speech and language pathologists’ (SLPs’) case loads were considered severely/ profoundly impaired. These school based SLP’s also reported a mean case load of 50 children.3 With such a high case load and severity, it is understandable that some of these

Small Steps in Speech tries to bridge the gap between school based and private services. Through public support, we provide grants on behalf of children for therapies, treatments, communication devices, and other services to improve their communication. The children we help would go without these services or the services would otherwise present a financial hardship on their family.

Small Steps in Speech Inaugural Newsletter!

The lack of these therapies and services can have a life long effect on children with speech and language disorders. Academic performance, social interactions, relationships and self confidence are all impacted and can be compromised by poor communication skills.

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Celina’s Story

Celina is a 2010 Small Steps in Speech grant recipient. Below is an excerpt of the testimonial from Celina’s family. Read how a grant from Small Steps in Speech is having a big impact on their daughter!

...What most people don’t see are the tears, the meltdowns, and the frustration from child and parents when something as basic as speaking is a challenge. Looking back, it’s not easy to forget the countless times mom, dad, and daughter would end up on the floor, a heap of exhausted emotion, all because there were no answers to simple questions like, “what’s wrong?”, “does something hurt?”, “did someone hurt you?”, “are you hungry?” “mad?”, “tired?”, or “do you need a hug?”. Speech has been the cornerstone therapy for all of our Celina’s successes. The Autism diagnosis came at the age of 23 months for our 6 year old daughter, and even then, we knew that the diagnosis would not define Celina, but rather the prognosis would be shaped by our determination to retrieve her from the Autism that had taken her from us. Continued on page 5...

www.smallstepsinspeech.org

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Pictured Above: SSIS board members at the ASHA Convention in Phila.

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The “Try for Speech” Rugby Tournament was first founded by Millersville University student and resident assistant (RA) Chris Schulz in November 2009. Schulz was inspired by the On Your Marc 5k event to create a fundraiser for SSIS. Chris attended Methacton High School, Marc Small’s alma mater.

The convention was attended by over 10,000 people including; school based and private speech and language pathologists, clinical/medical therapists, academicians, vendors and members of the public.

The first Try for Speech tournament was such a success that it has been held four times. The first three rugby tournaments raised approximately $2000 for SSIS!

The SSIS booth was very busy with people wanting to learn more about the organization. It was a great opportunity to network and spread word of the services that SSIS can provide to children and families in need, as well as to other charitable organizations.

Small Steps in Speech recognizes Chris Schulz’s dedication to the “Try for Speech” tournament and deeply appreciates the support of the participants and the Millersville University community. Check out the “Try for Speech 3” video on YouTube!

The common message that the board members heard was that there is an overwhelming need for an organization like Small Steps in Speech. We are a unique organization specifically dedicated to funding additional therapies and needs for children with speech and language disorders.

http://youtu.be/75qUzLpCdP4

GET INVOLVED!

This event was not the first debut of Small Steps in Speech within the ASHA community. In November of 2009, the ASHA Leader newsletter published an article spotlighting Small Steps in Speech and the organization’s inspiration and dedication to the needs of children with speech and language disorders.

Help support Small Steps in Speech by creating your own fundraiser! Bake Sales Car Wash

Check out www.smallstepsinspeech.org/ssis-in-the-media for a link to the ASHA 2009 spotlight article.

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On the weekend of April 9-10, 2011, Millersville University in Pennsylvania hosted the 4th “Try for Speech” Rugby Tournament, with all proceeds benefiting Small Steps in Speech.

Coincidentally the 2010 ASHA convention was held in Philadelphia; Small Steps in Speech is Incorporated in New Jersey with all of its Board members living in the Philly area.

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Millersville University Tries for Speech!

The American Speech-Language-Hearing Association (ASHA) 2010 National Convention was held this past November in Philadelphia, PA. Small Steps in Speech (SSIS) Board Members attended the convention and staffed the booth for the event’s three days.

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Pictured Above: “Try for Speech” Tournament Participants

Success for SSIS at the 2010 ASHA Convention

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Collection Jars Staff Jeans Days

Tournaments Yard Sales

Your support, big or small, can help make a difference to the life of a child with speech and/or language disorders and their family. !

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Small Steps in Speech Inaugural Newsletter


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Pictured Above: Amanda Charney and Mary MacFarland at the Phillies Charities, Inc. Holiday Giving Party Continued from page 3...

PHILADELPHIA PHILLIES H O L I D AY G I V I N G P A R T Y On December 13, 2010, Small Steps in Speech was honored to attend the 9th annual Philadelphia Phillies Holiday Giving Party at Citizens Bank Park. Phillies Charities, Inc. raises dollars to award grants to charitable organizations in Pennsylvania, New Jersey, Delaware, and near their spring training facilities and minor league affiliates. Every charitable organization considered must be nominated by a Phillies employee and the worthiest causes are awarded grants. Small Steps in Speech was awarded a grant, which Amanda Charney, Director, and Mary MacFarland, President, were present to accept on behalf of SSIS. There were over 40 charities receiving awards and only 4 were selected to talk about their cause. SSIS was one of the lucky 4. Amanda Charney spoke of her passion for the foundation and how she was inspired to create the organization to honor Marc’s memory. She also shared Marc’s love

of the Phillies and how he was able to attend the World Series parade in 2008, just months before leaving for Afghanistan. Amanda also shared what SSIS has accomplished in less than 2 years, for children and families, local as well as around the country. Amanda ended with thanking John Weber, Phillies V.P. of Sales & Ticket Operations, for nominating SSIS for the grant, as well as the Phillies Charities Board for recognizing the importance of SSIS’s cause and honoring an American hero. It was a very uplifting night for all awardees. Amanda and Mary were happy to be able to spread the word about Small Steps in Speech and to celebrate SSG Marc Small's memory. A huge Thank You to the Phillies Charities, Inc. organization and John Weber, Phillies V.P. of Sales & Ticket Operations.

Go Phillies!

Have a smart phone with a QR code reader app? If not sign up at our website or at: http://bit.ly/SSIS_email_signup !

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Warmest Wishes, Celina’s Family References: 1 - 34 CFR Parts 300 & 301, IDEA 2006 2 - National Dissemination Center for Children with Disabilities, Disability info: Disability Fact Sheet #11, www.nichcy.org/pubs/factshe/FS11txt.htm 3 - American Speech-Language-Hearing Association, 2010 Schools Survey Report: SLP caseload characteristics, www.asha.org/research/memberdata/ SchoolSurvey.htm

Join our Email List!

Small Steps in Speech Inaugural Newsletter!

All treatment comes at a price, and for our family, the grant from Small Steps in Speech is truly life altering. It is a great relief to not have to think about what we can give, versus what our Celina needs, and what she needs is to continue her speech therapy. We’ve gone from two to three words used to request the most basic of needs, to having the honor of being able to get to know our daughter. With every passing day, aided by her speech therapy, we see emerging a witty, girly, diva personality, who can now voice her wants, needs, preferences, and love. Just last week, we witnessed Celina’s first unprompted question! She pointed to a flower, and asked “Mommy, what’s that?” Mom responded, “A flower”. She giggled and asked again, “what’s that?” Mom said, “It’s a daisy”, and Celina replied, “Daisies are beautiful, Mommy.” ... Thank you and God Bless you, Board of Directors of Small Steps in Speech. Slowly but surely we are getting back the giggly, bright-eyed daughter we thought we’d lost. With your help, our Celina continues to find her voice one Glorious, Small Step at a time.

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Pictured Above: Beef and Beer June 19, 2010, South Jer-z Riderz Charity Ride June 12, 2010, 2nd Annual On Your Marc 5K August 7, 2010

2010 YEAR 2010 was a year of growth and maturity for Small Steps in Speech (SSIS). We began the year asking “What do we want this organization to accomplish?” Refining goals, fulfilling our mission to assist children with speech and language disorders, while continuing to fundraise best characterizes our efforts in 2010. The organization was founded in memory of my son, SSG Marc J. Small, but it has become more than just a memorial to our hero. In 2010 SSIS began to realize its objective of helping children and families communicate with one another.

belief in our mission to provide financial assistance to help children with speech and/or language disorders. We are grateful for the outpouring of public and private support, including financial, in time, and in talents, during this year of growth and maturity. As we look forward to 2011 there is a great deal of excitement and optimism about the future of our foundation and the children and families we serve. Our goals for 2011 include increasing the number of grants awarded to children and to continue to spread awareness of SSIS throughout the country.

During the first quarter of 2010 we saw applications arriving. It was so exciting for us that our foundation was starting to get attention! With the assistance of our talented and experienced Board of Directors, Small Steps in Speech awarded over $31,000 in grants in 2010. We were able to help 14 children take those “steps” to better their communication through speech therapy, workshops, augmentative communication devices and other means.

Mary MacFarland President Small Steps in Speech, Inc. “The reward of a thing well done is to have done it.” ~Ralph Waldo Emerson

Fundraising is an integral component of having funds to award to children! The Board of Directors and friends of SSIS continued to raise money for the foundation. Our two major fundraisers raised over $50,000 in 2010! The Beef and Beer dinner and auction in June raised over $20,000 and the “On Your Marc” 5K Run in August raised over $30,000. We are planning even more successful major fundraisers in 2011: On Your Marc 5K Run will be held on August 6, 2011 and the Oktoberfest will take place October 1, 2011.

can earn a donation every time you search the Internet and shop online!!!

One of our challenges in 2010 was to get our message of assistance to those who can use it most. We hosted a booth at the National Speech and Hearing Association’s annual meeting which increased our visibility, raised awareness of our cause, and developed community-based partnerships.

Search the web with Yahoo-powered GoodSearch.com and designate “Small Steps in Speech”. They’ll donate about a penny to our cause each time you search! Shop at more than 1,300 GoodShop.com merchants and a percentage of each purchase will go to Small Steps in Speech!

On behalf of the Board of SSIS, I wish to thank all those who have partnered with us in 2010, for your support and 6

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Small Steps in Speech Inaugural Newsletter


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In Appreciation The Small Steps in Speech Board of Directors would like to recognize and personally thank those who have helped support our work to assist children with communicative disorders.

HOW CAN WE HELP YOU?

Board of Directors

Do you know a child who would benefit from additional services or treatment? Perhaps you know an organization that serves children with communicative disorders? Please share our information with them and consider applying for a grant.

Amanda Charney - Founder & Executive Director Mary MacFarland - President Heather Wellock - Vice President Jennifer Lindsey - Treasurer Joyce Tierney - Secretary Wendy Christie Michelle Barnard

Speech Language Pathologists - if you know of any child who would benefit from financial assistance to help with their communication where insurance does not cover, nominate them today!

Keith Cormier - Advisory Board Ed Charney - Advisory Board

HOW CAN YOU HELP US?

Contact Us

Small Steps in Speech is publicly funded through individual donations and fundraising activities. Our 100% volunteer staff invites you to support their work with children through either an individual donation, by participating in one of our fundraising activities or by holding your own fundraiser to support Small Steps in Speech. You can change the life of not only a child but also their family with the gift of improved communication.

Small Steps in Speech, Inc. P.O. Box 134 Collingswood, NJ 08108 1-888-5-SPEAK-6 (1-888-577-3256) fax: 856-632-7741 info@smallstepsinspeech.org

LEARN MORE

There are many ways to donate!

Visit our website to learn more about our grants; including the full list of eligibility requirements, how our grants work, and the application process.

Visit our website

Read testimonials, find the latest news & events, sign up for our e-newsletter, and donate at: www.smallstepsinspeech.org

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S TAY C O N N E C T E D Follow us on Facebook and Twitter for the latest news and events! Small Steps in Speech Inaugural Newsletter!

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Helping children communicate one Small Step at a time Small Steps in Speech, Inc is a 501(c)(3) non-profit, charitable organization dedicated to helping children with speech and language disorders take the steps needed to be better communicators. Through public support, we provide grants on behalf of children for therapies, treatments, communication devices, and other services to improve their communication. The children we help would go without these services or they would otherwise present a financial hardship for their family.

Learn more about Small Steps in Speech inside our Inaugural Newsletter!

Small Steps in Speech, Inc. P.O. Box 134 Collingswood, NJ 08108 1-888-5-SPEAK-6 (1-888-577-3256) fax: 856-632-7741 www.smallstepsinspeech.org

Small Steps in Speech Inaugural Newsletter

Issue NËš1 - Spring 2011


Issue 1 e-Newsletter Small Steps in Speech