With a condition so rare that only one in 3000 babies born have this muscular disorder it’s easy to comprehend how alienated anyone with Arthrogryposis Multiplex Congenita (AMC) must feel. Through the hard work of one mother’s vision and an army of members, the AMC Support group has helped bridge the gap with the power of the internet. It is not only the group’s mission to provide and encourage a greater understanding and awareness of this condition, but also to provide a support system. To help those that have felt all their lives an outcast or alone, meet others who have lived that same life, to meet other families who have the same concerns and to provide a resource of information. But meeting on-line is not enough. It’s hard to explain to a mom exactly how another mom has taught her child to sit up without the use of his arms, or how one child learned to stand. What so many people take for granted: the ease of walking, typing, eating and breathing those with AMC have had to struggle to adapt to this world. Our conventions solidify that bridge and strengthen the bond of our AMC family. Once a year we come together, charge NO admission fee, bring professionals, doctors, physical therapists, occupational therapists, provide workshops and invite people throughout the world to learn, share, laugh, cry and grow. |
3rd Annual AMCSupport Convention
Dublin, Ohio ~ USA
July 17-20 2008
(exact times will be announced)
Convention Overview
A Convention in Support of Families Affected by Arthrogryposis Multiplex
Congentia.
Target Audience: The target audience of this convention are
parents and caregivers of children with AMC, adults with AMC, physicians,
physical therapists, occupational therapists, early interventionists and any
others interested in learning more about Arthrogryposis Multiplex Congenita.
Purpose: The purpose of this convention is to increase awareness
of AMC. Expand the knowledge of parents and professionals about this rare
disorder. To provide families comfort, support and hope through other
parent's journeys and through the encouraging life stories of Adults with Arthrogryposis.
Objectives: To help children, teens and adults with Arthrogryposis reach their
fullest potential through the education of parents, professionals and the
public.
Speakers/Workshops/Activities
Dr. Harold Van Bosse- director for the Arthrogryposis Center at The Center for Children at The New York University Hospital for Bone and Joint Disease.
Biography : http://www.med.nyu.edu/clinician/vanboh01.html
NYU Arthrogryposis Center: http://www.med.nyu.edu/hjd/centerforchildren/patient/arthrogryposis.html
Dr. Pappas and Ellen Moran- Genetics of New York University
Rick Guidotti- Positive Exposure Photography-
http://www.positiveexposure.org
Tanya Fernandez - Adult with Arthrogryposis and disability advocate
http://gcpd.ohio.gov/roster.asp#Fernandez
Ward Foley- Adult with Arthrogryposis and published Author
http://www.wardfoley.com/
Maureen Casey - IEP and Special Education-Parent of a child with AMC
BBQ at Miracle League Field and Miracle Playground - Fully accessible
baseball field and playground
http://www.ohiomiracleleague.org/
Painting with Theresa- Hands on painting with Theresa Lucas-an artist
with AMC
http://www.hometown.aol.com/terry2745/index.html
Canine Companions for Independence- assistance dogs for people with
Disabilities
http://cci.org/northcentral/index.html
Steve Balistreri- massage therapist who has treated his 7 year old son
with AMC since birth
Christina Battista- Cash and Counseling
Heather Perrow- Adaptive Dance
AMCSI BOD Public Meeting
Columbus Mobility Specialist-
http://www.columbusmobility.com/
MetDesk – Special Needs Trusts and Estate Planning
http://www.metlife.com/Applications/Corporate/WPS/CDA/PageGenerator/0,1674,P475,00.html
We are working on securing more speakers but we cannot release their names until
they have confirmed their
attendance and participation. As more people confirm we will let you know!
Cost to Attend: This convention is free for anyone but registration is required!
Fundraising
Although we do not charge a registration fee to attend
convention, we need your help! Please consider either making a personal donation
or organize a project to raise funds. All donations are tax deductible!
Arthrogryposis Multiplex Congenita Support, Inc. is a 501 (c) (3) Non Profit
corporation, registered with the United States Internal Revenue Service. If you
would like to fundraise for the convention but need ideas on how to do so,
please contact Ohio@amcsupport.org. We also sell AMC wristbands for the purpose
of awareness and raising funds for the convention. To purchase a wristband or
make a tax deductible donation, please go to: www.amcsupport.org
Checks may be sent to
Arthrogryposis Multiplex Congenita Support Inc
P.O. Box 1883
Salyersville, Ky 41465
Exhibitors: List coming soon. If your company would like to exhibit please contact
Marybeth Eberhard at marybeth @ amcsupport.org*Remove Spaces
Future Updates: Please watch this webpage for updates regarding convention childcare, speakers, schedules, fundraising, and how to pre-order Convention t-shirts.
Want to learn more or register for the convention? By completing the questionnaire below, you will be added to our database and will receive the newest information on the convention via email. Completing this form will also allow you to receive information regarding the location of the convention as well as how to book a room at a discounted rate.
“The AMCSI Board of Directors will not ask the speakers, presenters, or vendors attending our Third Annual AMCSupport Convention to provide one-on-one meetings, consultations, or any other specific medical recommendations to you, your child, or your family.”
“Furthermore, any and all medical information, therapeutic techniques, etc., obtained while in attendance should promptly be consulted with your/your child’s physician prior to any form of implementation.”
“We will not be responsible for ANY medical advice provided to you while at our convention or the result thereof. Any and all of our AMC Support Conventions are strictly a gathering for educational and recreational purposes until stated otherwise.”
Please fill out the information below to be added to our Ohio database for future updates regarding our 2008 AMCSupport Convention in Ohio.
Consumer Investment Funds for Attending Medical
and Disability Related Conferences/ Conventions/ Seminars
In an effort to assist people to come to the convention,†we are providing
links to possible grants that will help families defray the costs of attending.
All the grants listed here are through the various state Councils on People with
Developmental Disabilities. These links should take you directly to the grant
information and it should explain how to apply. If it fails to work simply click
here and
find your state and search through the site listed. If your state is NOT listed
click here
and go to your state’s Developmental Disability Council’s website and find the
email or phone for the council and contact them to see if this type of grant
exists in your state or if they can direct you somewhere to get financial
assistance to attend. These grants seem to be referred to as Consumer Investment
Funds, Consumer Empowerment Funds, Family Support Funds, or Educations Funds. I
only took about 5 minutes per website to search around so I may have missed some
buried in the site and some states may have the grant and not publish the
information online.
These grants come with LOTS of RED TAPE so read the fine print and apply very
early. As I was reading through these sites I noticed some common threads so I
will list some of them so you’re aware as you’re reading your states grant
information.
• Some grants will NOT allow the child to come unless you prove that their
attendance is welcomed and needed. (Let us know if you need proof of this)
• Some require that you match the amount of money they give or prove you’ve
looked for funding in other places.
• Most of these grants do NOT require you to prove income
• Most of these grants will pay for out-of-state conferences and convention
• The standard seems to be that they’ll pay $500 for in-state conventions/
conferences and up to $1200 for out of state.
• Read the fine print as to what they’ll pay for within the trip, some will pay
for transportation, some pay for tips but most don’t, some will only pay the
conference/ convention registration fee which we do NOT charge so you may have
to argue your case to get them to pay for the other expense incurred.
• Most will NOT give you the money before you attend, they will reimburse you up
to the grant amount awarded with proof of purchase so save your receipts! If
you’re on SSI or SSDI most have a process that you can go through to get the
money before you attend.
• Most of these grants require some work on your part AFTER the convention/
conference. These grants are usually granted with the hope that the knowledge
you gain at this conference/ convention will help the state somehow. Some
require you to write about your experience, do projects based on what you
learned, or be active in state disability issues. These projects post convention
really vary so be aware of your obligations before you accept the money.
Indiana
http://www.in.gov/gpcpd/fund/CIF_Indivi ... elines.pdf
Guidelines Explanation – App at the bottom
Alabama
http://www.acdd.org/About/consumer.htm#eligibility
California
http://www.scdd.ca.gov/programs_project
... policy.htm
http://www.icdd.idaho.gov/applic.aspx#funding
Massachusetts’s
http://www.mass.gov/mddc/cefp/index.htm
Missouri
http://www.mpcdd.com/content.php?cat=Gr ... ate%20Plan
not a good link but it says the state has Consumer Investment Funds so call
or write for details!!!
New Jersey
http://www.njddc.org/lts-fund.htm
New York-
http://ddpc.state.ny.us/publications/co ... rocess.pdf
Does NOT permit out of state conventions/ Conferences
Ohio
http://ddc.ohio.gov/Abt/EFP.htm
Tennessee
http://www.state.tn.us/cdd/consumertravelgrant.html
Texas
http://www.txddc.state.tx.us/grants_pro ... tipend.asp
Vermont
http://humanservices.vermont.gov/boards ... d-grants-1
Wyoming
http://ddcouncil.state.wy.us/ParentFam.htm
West Virginia
http://www.wvddc.org/grant_information.html
They provide money for conferences/ conventions but doesn’t give a way for applying. Contact them directly.
Ohio Related Websites
Transportation
Port Columbus International Airport (Airport Code: CMH)- http://www.port-columbus.com/home.asp - Information on ground transportation (shuttles, Taxi’s or rentals), maps, passenger services and airline information.
Skybus Airline- Low cost Airline based out of Port Columbus. Offers some seats for $10 one-way (must book many months in advance to secure that rate) To read about the airline- http://en.wikipedia.org/wiki/Skybus_Airlines To book tickets- http://www.skybus.com/
Central Ohio Transit Authority (COTA)- http://www.cota.com/ Public Transportation in the Central Ohio Area.
Buckeye Traffic- http://www.buckeyetraffic.org/otis/roads/default.asp Check to see the construction projects that may be happening on the roads you’re traveling
Maps- Close view maps
Ohio- http://www.dot.state.oh.us/map1/ohiomap/images/OTM2007ALG.jpg
Columbus Metro Area- http://www.dot.state.oh.us/map1/ohiomap/images/city/columbus.jpg
Franklin County- http://www.dot.state.oh.us/map1/ohiomap/images/county/fra.jpg
Dublin Interactive Map- http://www.irishisanattitude.com/locator_maps.asp
Interstates Running through Ohio- http://www.dot.state.oh.us/map1/IMAP.HTM
Ohio Interstate Exit Guide- http://www.dot.state.oh.us/tic/exitguide.asp
Visitor Information and attractions
Discover Ohio- http://consumer.discoverohio.com/ Tourist Information and attractions throughout the state.
Dublin Convention and Visitors Bureau- http://www.irishisanattitude.com/
Experience Columbus- http://www.experiencecolumbus.com/
COSI- http://www.cosi.org/home/
Columbus Museum of Art- http://www.columbusmuseum.org/
Columbus Zoo and Aquarium- http://www.colszoo.org/
Franklin Park Conservatory & Botanical Gardens- http://www.fpconservatory.org/
Franklin County Weather- http://forecast.weather.gov/MapClick.php?zoneid=OHZ055
Tuttle Mall- http://www.simon.com/mall/default.aspx?ID=1229
Easton Towne Center (Mall) - http://www.eastontowncenter.com/
Polaris Mall- http://www.polarisfashionplace.com/
Disclaimer- AMC Support Inc. Does not endorse any of above companies or organizations, we are simply providing the websites to make your trip to the Convention more enjoyable.
Travel Resources for People with Disabilities
Safety and security procedures sometimes make air travel difficult for people with disabilities. Here are some resources to make air travel a better experience:
• Air Travel: A Guide for People with Disabilities. United Spinal Association’s booklet on making reservations, getting to the airport, and handling problems. Call 1-800-444-0120 for a copy, or get it online at www.unitedspinal.org/pdf/ accessible_air_travel.pdf .
From the U.S. Departments of Transportation and Homeland Security:
New Horizons: Information for the Air Traveler with a Disability, at http://airconsumer.ost.dot.gov/ publications/horizons.htm
Travelers with Disabilities and Medical Conditions,
at www.tsa.gov/travelers/airtravel/specialneeds/index.shtm
Passengers with Disabilities,
at http://airconsumer.ost.dot.gov/ publications/disabled.htm
Air Travel Service Problems: How complaints
are handled, at http://airconsumer.ost.dot.gov/problems.htm
For questions or immediate help, call the U.S. Department of Transportation’s toll-free
hotline at 1-800-778-4838 (voice) or 1-800-455-9880 (TTY).
This information was taken from DD Quarterly a publication of the Ohio Developmental Disabilities Council http://ddc.ohio.gov/Pub/DDSummer07.pdf