Hello fellow AMCers & families,
just a quick reminder that Arthrogryposis Multiplex Congenita Support, Inc's 4th
annual convention is a little over a?month away!!? July 16th-19th 2009 in
Philadelphia PA.
to register or for more info go to : http://www.amcsupport.org/pa

To view last years convention pics go to http://www.amcsupport.org/ohio

any questions email pa@...

come join a fun filled weekend with us!


~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


[Non-text portions of this message have been removed]

A group for support and understand in dealing with relationship
for the disabled...You first need self worth and self confidence in yourself
before you can deal with romance and intimacy...










http://groups.yahoo.com/group/INTIMACYFORTHEDISABLED/

Arthrogryposis Multiplex Congenita Support, Inc
4th annual AMC Convention
July 16-19th, 2009
for more info go to
http://www.mcsupport.org/pa
Schedule

 

Thursday July 16, 2009

Registration
Begins                                     \
                          
                                   5-11pm

Please feel free to bring your family and your own take out food for bonding
together as we get the convention started.

 

Evening adaptive swimming for the kids (Jane Styer-Acevedo)
                                  
            6:30-7:30pm

 

Friday July 17, 2009

 





Friday



Section 1



Section 2



Tweens/ Teens



Younger kids





7-8:45



Breakfast on your own



Kids sign in starts at 8:40





8:45-9:10



Opening Slide show



Arts and crafts start planning for talent show



Music, art, books and play.

 





9:15-10



Keynote: Genetics of Contracture Syndromes     Dr.Judith Hall



Scav
enger hunt group 1 / group 2 in room





10-10:15



 break





Breakout session 1 10:15-11



 WREX, BFO’s, overhead slings

Tariq Ramad &

Marnie King



Adult Orthopedic Issues

 

Dr. MaryAnn Keenan



Scavenger hunt group 2/ group 1 in room





11-11:15



break





Breakout session 2 11:15-12



Knees with Arthrogryposis

Dr.S. Jayakumar



Hippotherapy to Equestrian Dream

Elizabeth Pigott



Fire department





12-1:30



Lunch on your own : no programming





Breakout session 3

1:30-2:15



Bracing options with arthrogryposis

 

Gary Michalowski



Upper extremity issues

 

Dr. Scott Kozin



Peers teaching peers shoes and socks (adults and tween/teen activity)



SibShop w/Savanna

(kids under 10 years)

 

Savanna Keeton



Music, art, books and play.

 





2:15-2:30



break





Breakout session 4

2:30- 3:30



Hand splints and elbow splints

 

Marnie King



Lower extremity issues

 

Dr. Harold vanBosse



How do you do it?

Tweens help the younger kids problem solve snack time.

(Make your own ice cream)





3:30-3:45



break





Breakout session 5 3:45-4:45



Ask the professionals

(Please submit questions in advance.)



Adults with AMC share with teens and tweens



 





5:00



Group Picture





5:15- 6



Dance with Luca:   C2Luca Pateulli          Main Ballroom before
dinner





6- 11



Dinner and Talent Show























 

 


 

 

Saturday July 18, 2009

 





 



Session 1



Session 2/3



Tweens/Teens



Younger kids





7-8:30



Bring you breakfast to round tables



 





8:30-9:30



Membership meeting



 



 Kids’ drop off starting at 9am





Breakout session 6 9:30-10:30



Chris Hartwick: Adult with AMC



Home school

 

Brita Kilgore



Assistive  Technology/Voice activated computer systems

Amanda Reinsfelder



Music, art, books and play.

 





10:30-10:45



break



 



Chaku the Clown

 





Breakout session 7 10:45-11:45



Hopes and Dreams with Ani

 

 Ani Samargian



Disabled Alone : Future planning for your disabled child

 

Lee Ackerman



SibShop w/Savanna   (kids10 years and older)

 

Savanna Keeton





12-1:30



Lunch on your own



No programming





1:30-2:30



A child becomes an adult: Sending off the child to independence

 parent, child, and adult perspective



2pm Start Painting with Theresa  and Company





2:30-3:30



Finish the conversation:

a child becomes an adult



Painting with Theresa and Company

Theresa Lucas

Face
Painting: Chris Hartwick

Make your own Scarman Doll: Ward Foley

                                        \
               (2-5pm)





3:45- 4:30



Housing adaptations





5-7



Bring your dinner and meet for a Picnic dinner weather permitting (venue options
TBA)





7-8



AMC Adults conversation and cocktails (cash bar)



 



No official Programming





8-9



“Don't Call Me a Hero, Just Call Me Momma" - Honoring 'Mom'





9-11



 



























 

Morning Round Tables before programming on Saturday:

IEP/504

Driving a car

Nurturing relationships

Dressing sticks and bath tub aids

How do you cook?

Grandparents

Strategies to push through the challenging behaviors in the first few years

Make off the shelf items customized for specific needs

Teens and tweens participate in IEP

Sports and recreation: what do you do?

 

 

Sunday July 19, 2009

Hugs, Good-byes, and an adventure to the liberty bell for those who want to
attend.

 

 

 



~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


[Non-text portions of this message have been removed]

oppss!  the website wasnt right...

its http://www.amcsupport.org/pa
email questions/comments to PA@... or BOD@...



~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


-----Original Message-----
From: Theresa Lucas <terry2745@...>
To: amc_adults@yahoogroups.com; avenues2@yahoogroups.com;
avenues@yahoogroups.com; Adults_With_Arthrogryposis@yahoogroups.com;
ArthrogryposisSupport@yahoogroups.com
Sent: Mon, Jun 15, 2009 11:55 am
Subject: AMCSI Convention Schedule of events




Arthrogryposis Multiplex Congenita Support, Inc
4th annual AMC Convention
July 16-19th, 2009
for more info go to
http://www.mcsupport.org/pa
Schedule

 

Thursday July 16, 2009

Registration
Begins                                     \
                   ;        
                                   5-11pm

Please feel free to bring your family and your own take out food for bonding
together as we get the convention started.

 

Evening adaptive swimming for the kids (Jane Styer-Acevedo)
                    =C
2                           6:30-7:30pm

 

Friday July 17, 2009

 





Friday



Section 1



Section 2



Tweens/ Teens



Younger kids





7-8:45



Breakfast on your own



Kids sign in starts at 8:40





8:45-9:10



Opening Slide show



Arts and crafts start planning for talent show



Music, art, books and play.

 





9:15-10



Keynote: Genetics of Contracture Syndromes     Dr.Judith Hall



Scavenger hunt group 1 / group 2 in room





10-10:15



 break





Breakout session 1 10:15-11



 WREX, BFO’s, overhead slings

Tariq Ramad &

Marnie King



Adult Orthopedic Issues

 

Dr. MaryAnn Keenan



Scavenger hunt group 2/ group 1 in room





11-11:15



break





Breakout session 2 11:15-12



Knees with Arthrogryposis

Dr.S. Jayakumar



Hippotherapy to Equestrian Dream

Elizabeth Pigott



Fire department





12-1:30



Lunch on your own : no programming





Breakout session 3

1:30-2:15



Bracing options with arthrogryposis

 

Gary Michalowski



Upper extremity issues

 

Dr. Scott Kozin



Peers teaching peers shoes and socks (adults and tween/teen activity)



SibShop w/Savanna

(kids under 10 years)

 

Savanna Keeton



Music, art, books and play.

 






2:15-2:30



break





Breakout session 4

2:30- 3:30



Hand splints and elbow splints

 

Marnie King



Lower extremity issues

 

Dr. Harold vanBosse



How do you do it?

Tweens help the younger kids problem solve snack time.

(Make your own ice cream)





3:30-3:45



break





Breakout session 5 3:45-4:45



Ask the professionals

(Please submit questions in advance.)



Adults with AMC share with teens and tweens



 





5:00



Group Picture





5:15- 6



Dance with Luca: &nbs p;  Luca Pateulli          Main Ballroom before
dinner





6- 11



Dinner and Talent Show























 

 


 

 

Saturday July 18, 2009

 





 



Session 1



Session 2/3



Tweens/Teens



Younger kids





7-8:30



Bring you breakfast to round tables



 





8:30-9:30



Membership meeting



 



 Kids’ drop off starting at 9am





Breakout session 6 9:30-10:30



Chris Hartwick: Adult with AMC



Home school

 

Brita Kilgore



Assistive  Technology/Voice activated computer systems

Amanda Reinsfelder



Music, art, books and play.

 





10:30-10:45



break



 



Chaku the Clown

 





Breakout session 7 10:45-11:45



Hopes and Dreams with Ani
=0
A 

 Ani Samargian



Disabled Alone : Future planning for your disabled child

 

Lee Ackerman



SibShop w/Savanna   (kids10 years and older)

 

Savanna Keeton





12-1:30



Lunch on your own



No programming





1:30-2:30



A child becomes an adult: Sending off the child to independence

 parent, child, and adult perspective



2pm Start Painting with Theresa  and Company





2:30-3:30



Finish the conversation:

a child becomes an adult



Painting with Theresa and Company

Theresa Lucas

Face Painting: Chris Hartwick

Make your own Scarman Doll: Ward Foley

                                        \
               (2-5pm)





3:45- 4:30



Housing adaptations





5-7



Bring your dinner and meet for a Picnic dinner weather permitting (venue options
TBA)





7-8



AMC Adults conversation and cocktails (cash bar)



 



No official Programming





8-9



“Don't Call Me a Hero, Just Call Me Momma" - Honoring 'Mom'





9-11



 



























 

Morning Round Tables before programming on Saturday:

IEP/504

Driving a car

Nurturing relationships

Dressing sticks and bath tub aids

How do=2
0you cook?

Grandparents

Strategies to push through the challenging behaviors in the first few years

Make off the shelf items customized for specific needs

Teens and tweens participate in IEP

Sports and recreation: what do you do?

 

 

Sunday July 19, 2009

Hugs, Good-byes, and an adventure to the liberty bell for those who want to
attend.

 

 

 



~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator





[Non-text portions of this message have been removed]

As you know we take great pride in being able to offer our AMC Families
assistance in 'any' way we possibly can. So it was pretty amazing when, Reenee
Donohoe - 09' Convention Co-Chair, received a donation of many, many, wonderful
products for us to offer our AMC Families (all proceeds benefiting this years
convention)!! What's even more amazing is that we get to bring these items to
you with a SIGNIFICANT SLASH IN PRICING!!

Items listed in the following order: Quantity - Description - *Suggested Retail
Price
*Suggested Retail prices are provided so that you may see the items actual
'worth' and is 'not' what we are asking for them.

1. 2 - Special Needs Doll in Wheelchair w/glasses & custom made (by R. Donohoe)
splints - $29.95


2. 5 - Bath Tub Seat w/Suction Cups - $53.50


3. 1 - Big Keys LX for PC - Qwerty - $105.00


4. 3 - P/L, Walk/Crawl, Bl/Yel - $38.95 *Pic coming soon!

5. 1 - Wrist/Thumb Spica Right Large - $14.38
6. 1 - Wrist/Thumb Spica Left Large - $14.38


7. 2 - Junior w/Hand Brake/Childs Walker - $243.80 *Pic coming soon!

8. 1 - Shape Sorter Gator - $10.98


9. 10 - Ergonomic RT Angle Carv Fork - $5.15


10. 1 - Writing w/Symbols 2000 (Win) - $119.40


11. 1 - Picture Communication Symbols Book - $53.40


12. 3 - Deluxe Soup Bowl, color: Bone - $5.98 *Pic coming soon!

13. 19 - Elastic Shoelaces, 24" White $0.84


14. 13 - Ped. Srhand. Plstsl Teaspoon - $3.65


15. 4 - Flexbl Sock/Stocking Hlpr-Rtl Pkg - $4.56


16. 3 - TBL Spoons (12pk) - $17.40


17. 11 - Deluxe Salad Plate, color: Bone - $4.99 *Pic coming soon!

18. 7 - 2" Juggle Cubes, 4pcs. - $7.00 *Pic coming soon!

19. 8 - 20" Beach Balls - $0.93
20. 9 - 36" Beach Balls - $3.08


We were going to put these items on eBay, but when we do that eBay gets a 'cut'
as well as 'missionfish' so 'for now' we are posting the items we have and
offering you the chance to purchase them directly from here!! If you are
interested in any of these products, email: admin@... for actual
pricing &/or more information!! *All proceeds go to AMCSI who assumes no
liability for the products.

AND Don't forget to check out the beautiful Therapy Benches that were hand made
by a team of volunteers by Jeff and Jennie Bertke!!
For pricing and more information, please visit: visit: viewtopic.php?f=43&t=6799

*Arthrogryposis Multiplex Comgenta Support, Inc,?or above mentioned named,?shall
not be liable for any direct, indirect, special, incidental, or consequential
damages, , arising out of the sale, service, furnishing performance or use of
any information, data or materials sold or provided under this Agreement

~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


[Non-text portions of this message have been removed]

Ok, so the pictures didnt go through the yahoogroups.......if you want a pic of
any item, email admin@... asking for one & we will send it directly
to you,
THANKS!

*Arthrogryposis Multiplex Congenita Support, Inc,?or above mentioned
named,?shall not be liable for any direct, indirect, special, incidental, or
consequential damages, , arising out of the sale, service, furnishing
performance or use of any information, data or materials sold or provided under
this Agreement


~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


-----Original Message-----
From: Theresa Lucas <terry2745@...>
To: avenues2@yahoogroups.com; avenues@yahoogroups.com;
amc_adults@yahoogroups.com; Adults_With_Arthrogryposis@yahoogroups.com;
Arthrogryposis@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
admin@...
Sent: Thu, Jun 18, 2009 8:49 am
Subject: AMCSI has items for sale


As you know we take great pride in being able to offer our AMC Families
assistance in 'any' way we possibly can. So it was pretty amazing when, Reenee
Donohoe - 09' Convention Co-Chair, received a donation of many, many, wonderful
products for us to offer our AMC Families (all proceeds benefiting this years
convention)!! What's even more amazing is that we get to bring these items to
you with a SIGNIFICANT SLASH IN PRICING!!

Items listed in the following order: Quantity - Description - *Suggested Retail
Price
*Suggested Retail prices are provided so that you may see the items actual
'worth' and is 'not' what we are asking for them.

1. 2 - Special Needs Doll in Wheelchair w/glasses & custom made (by R. Donohoe)
splints - $29.95


2. 5 - Bath Tub Seat w/Suction Cups - $53.50


3. 1 - Big Keys LX for PC - Qwerty - $105.00


4. 3 - P/L, Walk/Crawl, Bl/Yel - $38.95 *Pic coming soon!

5. 1 - Wrist/Thumb Spica Right Large - $14.38
6. 1 - Wrist/Thumb Spica Left Large - $14.38


7. 2 - Junior w/Hand Brake/Childs Walker - $243.80 *Pic coming soon!

8. 1 - Shape Sorter Gator - $10.98


9. 10 - Ergonomic RT Angle Carv Fork - $5.15


10. 1 - Writing w/Symbols 2000 (Win) - $119.40


11. 1 - Picture Communication Symbols Book - $53.40


12. 3 - Deluxe Soup Bowl, color: Bone - $5.98 *Pic coming soon!

13. 19 - Elastic Shoelaces, 24" White $0.84


14. 13 - Ped. Srhand. Plstsl Teaspoon - $3.65


15. 4 - Flexbl Sock/Stocking Hlpr-Rtl Pkg - $4.56


16. 3 - TBL Spoons (12pk) - $17.40


17. 11 - Deluxe Salad Plate, color: Bone - $4.99 *Pic coming soon!

18. 7 - 2" Juggle Cubes, 4pcs. - $7.00 *Pic coming soon!

19. 8 - 20" Beach Balls - $0.93
20. 9 - 36" Beach Balls - $3.08


We were going to put these items on eBay, but when we do that eBay gets a 'cut'
as well as 'missionfish' so 'for now' we are posting the items we have and
offering you the chance to purchase them directly from here!! If you are
interested in any of these products, email: admin@... for actual
pricing &/or more information!! *All proceeds go to AMCSI who assumes no
liability for the products.

AND Don't forget to check out the beautiful Therapy Benches that were hand made
by a team of volunteers by Jeff and Jennie Bertke!!
For pricing and more information, please visit: visit: viewtopic.php?f=43&t=6799

*Arthrogryposis Multiplex Comgenta Support, Inc,?or above mentioned named,?shall
not be liable for any direct, indirect, special, incidental, or consequential
damages, , arising out of the sale, service, furnishing performance or use of
any information, data or materials sold or provided under this Agreement

~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator





[Non-text portions of this message have been removed]

Hi Theresa, when you send these e-mails, I do get them in duplicate only
because I am signed up with avenues, adults with amc  etcl.  However lately
when you send, many duplicates are coming from you so I actually have 16
e-mails (same topics) so I am getting 4 e-mails each on one address?  I am
not sure if this is coming from your e-mail or the problem is mine?  But it
only happens with your e-mails?  Weird?



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of Theresa Lucas
Sent: June-18-09 5:57 AM
To: avenues2@yahoogroups.com; avenues@yahoogroups.com;
amc_adults@yahoogroups.com; Adults_With_Arthrogryposis@yahoogroups.com;
Arthrogryposis@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
admin@...
Subject: [Adults AMC] Fwd: AMCSI has items for sale








Ok, so the pictures didnt go through the yahoogroups.......if you want a pic
of any item, email admin@... <mailto:admin%40amcsupport.org>
asking for one & we will send it directly to you,
THANKS!

*Arthrogryposis Multiplex Congenita Support, Inc,?or above mentioned
named,?shall not be liable for any direct, indirect, special, incidental, or
consequential damages, , arising out of the sale, service, furnishing
performance or use of any information, data or materials sold or provided
under this Agreement

~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator

-----Original Message-----
From: Theresa Lucas <terry2745@... <mailto:terry2745%40aol.com> >
To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com> ;
avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> ;
amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
Adults_With_Arthrogryposis@yahoogroups.com
<mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
Arthrogryposis@yahoogroups.com <mailto:Arthrogryposis%40yahoogroups.com> ;
ArthrogryposisSupport@yahoogroups.com
<mailto:ArthrogryposisSupport%40yahoogroups.com> ; admin@...
<mailto:admin%40amcsupport.org>
Sent: Thu, Jun 18, 2009 8:49 am
Subject: AMCSI has items for sale

As you know we take great pride in being able to offer our AMC Families
assistance in 'any' way we possibly can. So it was pretty amazing when,
Reenee Donohoe - 09' Convention Co-Chair, received a donation of many, many,
wonderful products for us to offer our AMC Families (all proceeds benefiting
this years convention)!! What's even more amazing is that we get to bring
these items to you with a SIGNIFICANT SLASH IN PRICING!!

Items listed in the following order: Quantity - Description - *Suggested
Retail Price
*Suggested Retail prices are provided so that you may see the items actual
'worth' and is 'not' what we are asking for them.

1. 2 - Special Needs Doll in Wheelchair w/glasses & custom made (by R.
Donohoe) splints - $29.95

2. 5 - Bath Tub Seat w/Suction Cups - $53.50

3. 1 - Big Keys LX for PC - Qwerty - $105.00

4. 3 - P/L, Walk/Crawl, Bl/Yel - $38.95 *Pic coming soon!

5. 1 - Wrist/Thumb Spica Right Large - $14.38
6. 1 - Wrist/Thumb Spica Left Large - $14.38

7. 2 - Junior w/Hand Brake/Childs Walker - $243.80 *Pic coming soon!

8. 1 - Shape Sorter Gator - $10.98

9. 10 - Ergonomic RT Angle Carv Fork - $5.15

10. 1 - Writing w/Symbols 2000 (Win) - $119.40

11. 1 - Picture Communication Symbols Book - $53.40

12. 3 - Deluxe Soup Bowl, color: Bone - $5.98 *Pic coming soon!

13. 19 - Elastic Shoelaces, 24" White $0.84

14. 13 - Ped. Srhand. Plstsl Teaspoon - $3.65

15. 4 - Flexbl Sock/Stocking Hlpr-Rtl Pkg - $4.56

16. 3 - TBL Spoons (12pk) - $17.40

17. 11 - Deluxe Salad Plate, color: Bone - $4.99 *Pic coming soon!

18. 7 - 2" Juggle Cubes, 4pcs. - $7.00 *Pic coming soon!

19. 8 - 20" Beach Balls - $0.93
20. 9 - 36" Beach Balls - $3.08

We were going to put these items on eBay, but when we do that eBay gets a
'cut' as well as 'missionfish' so 'for now' we are posting the items we have
and offering you the chance to purchase them directly from here!! If you are
interested in any of these products, email: admin@...
<mailto:admin%40amcsupport.org>  for actual pricing &/or more information!!
*All proceeds go to AMCSI who assumes no liability for the products.

AND Don't forget to check out the beautiful Therapy Benches that were hand
made by a team of volunteers by Jeff and Jennie Bertke!!
For pricing and more information, please visit: visit:
viewtopic.php?f=43&t=6799

*Arthrogryposis Multiplex Comgenta Support, Inc,?or above mentioned
named,?shall not be liable for any direct, indirect, special, incidental, or
consequential damages, , arising out of the sale, service, furnishing
performance or use of any information, data or materials sold or provided
under this Agreement

~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

(sorry if some of you are getting duplicate emails as Im sending this to all amc
yahoo groups)

Convention (in Philly, PA July 16-19th))  is only a few weeks away and we are
looking forward to having a
fantastic time!!! If you are attending or still need to register, please
read the following announcements
to register go to htpp://www.amcsupport.org/pa



URGENT PLEASE BOOK HOTEL ROOMS!!

When we signed our contract for this year’s convention we assumed their
would be a large draw with Dr Hall, Luca and other medical professionals
attending, not to mention moving to the East coast. However, the economy is
not in our favor. We currently have 92 rooms booked and need to have at
least 120. If you have not registered or booked your hotel rooms, please do
so as soon as possible.

Looking forward to a great convention! We all have worked really hard!
MaryBeth Eberhard



PRE-ORDER YOUR CONVENTION TEES!!!


Convention t-shirts will be worn for the group photo.

You will be able to pick up your t-shirts upon arrival at convention.

Quantities are limited. Please order early to guarantee your desired sizes.

http://www.amcsupport.org/conventionteez.htm

Early bird special is $10. Shirts will be sold onsite during the convention
for $12. All orders MUST be placed by July 1.

This form is for Paypal payments only. If you don't have a Paypal account
and don't want to use a credit card, please email pa@... with
the subject line: T-SHIRT PRE-ORDER. Include your name, quantity and
  shirt
sizes. If you have questions regarding the t-shirts, please contact
pa@...



Sib-Shop Tie-Dye T-Shirt!
As most of you know, we do our best to incorporate not only our AMC’ers &
their parents, but their siblings in our annual conventions as well. Each
year Savanna (Jenilee’s Lil’ Sis) conducts a Sib-Shop session that brings
the siblings of AMC’ers together in a positive, fun, and ‘parent free’
atmosphere; where they can explore what it is like to live their lives as
the sibling to an AMC’er. This year Savanna has gone ‘hippie’ with
incorporating ‘The City of Brotherly Love’ and the statue found in LOVE
park, into the Sib-Shop session. She is offering ALL siblings participating
in Sib-Shop the opportunity to take home their own personalized, Sib-Shop
Tie-Dye T-Shirt!

Description: Hanes heavyweight 100% cotton T-Shirts (pre-shrunk and true to
size, therefore they should not shrink after washing).

Front: Inside are AMCSI's logo - The Lil' clubfeet of Abby Vinson along
with an inscription reading Philly 09' on top and http://www.amcsupport.org
underneath

Back: Below the sibling's name will be their AMC'ers name along with
Big/Lil Bro/Sis as per request

'ANYONE' can order a tee with the logo on the front if wanted!!
But only our "Siblings" will get the back personalized.

Sizing & *Cost (per shirt): Kids: 2-4, 6-8, 10-12, 14-16 $5.95 Adults:
S-5xl $6.95

Payment may be made: 1.) Via our secure PayPal button on our home20page,
WITH the added note: "For Sib-Shop Tee" or we won't know what your payment
is for, or 2.) Via ‘snail mail’ to:
AMCSI
ATT: Sib Shop
P.O. Box 1883
Salyersville, KY. 41465

Exact name (as you would like it to appear on your t-shirt) & size should
be submitted to Savanna – Sib Shop Coordinator: savanna@... NO
LATER than Friday, June 26, 2009 as orders will placed on Wednesday, July
1, 2009. Payment must be received prior to July 1st please. For more
information, contact Savanna savanna@...

*The pricing listed above will only be valid ‘IF’ we receive a minimum
order for 24 t-shirts!!
If the minimum order is not obtained, the pricing then becomes: Kids:
$11.00 and Adults: $12.00
This is not a requirement to attend the Sib-Shop Session but an added
‘bonus’ for those siblings who do!



NEED ASSISTANCE WITH AMCSI STORE IN PHILLY!!
We are in need of volunteers to help us at the AMCSI store table in Philly.
Times are
8:30am-5pm Friday and Sat july 17 & 18th PLEASE post your time on here (or
email Theresa terry2745@...) & we will try & get a schedule going. It can
be an hr or 2 hr @
a time



ADAPTIVE EQUIPMENT FUNDRAISER

As you know we take great pride in being able to offer our AMC Families
assistance in 'any' way we possibly can. So it was pretty amazing when,
Reenee Donohoe - 09' Convention Co-Chair, received a donation of many,
many, wonderful products for us to offer our AMC Families20(all proceeds
benefiting this years convention)!! What's even more amazing is that we get
to bring these items to you with a SIGNIFICANT SLASH IN PRICING!!


Items listed in the following order: Quantity - Description - *Suggested
Retail Price (provided so that you may see the items actual 'worth' and is
'not' what we are asking for them).

2 - Special Needs Doll in Wheelchair w/glasses & custom made (by R.
Donohoe) splints - $29.95
5 - Bath Tub Seat w/Suction Cups - $53.50
1 - Big Keys LX for PC - Qwerty - $105.00
3 - P/L, Walk/Crawl, Bl/Yel - $38.95
1 - Wrist/Thumb Spica Right Large - $14.38
1 - Wrist/Thumb Spica Left Large - $14.38
2 - Junior w/Hand Brake/Childs Walker - $243.80
1 - Shape Sorter Gator - $10.98
10 - Ergonomic RT Angle Carv Fork - $5.15
1 - Writing w/Symbols 2000 (Win) - $119.40
1 - Picture Communication Symbols Book - $53.40
3 - Deluxe Soup Bowl, color: Bone - $5.98
19 - Elastic Shoelaces, 24" White $0.84
13 - Ped. Srhand. Plstsl Teaspoon - $3.65
4 - Flexbl Sock/Stocking Hlpr-Rtl Pkg - $4.56
3 - TBL Spoons (12pk) - $17.40
11 - Deluxe Salad Plate, color: Bone - $4.99
7 - 2" Juggle Cubes, 4pcs. - $7.00
8 - 20" Beach Balls - $0.93
9 - 36" Beach Balls - $3.08

We were going to put these items on eBay, but when we do that eBay gets a
'cut' as well as 'missionfish' so 'for now' we are posting the items we
have and offering you the chance to purchase them directly from here!! If
you are interested in20any of these products, email: admin@...
for actual pricing &/or more information!! *All proceeds go to AMCSI who
assumes no liability for the products.

AND Don't forget to check out the beautiful Therapy Benches that were hand
made by a team of volunteers by Jeff and Jennie Bertke!! For pricing and
more information, please visit: visit: viewtopic.php?f=43&t=6799



IF YOU ARE A FIRST TIME ATTENDEE &/OR FIRST TIME PHILLY RESIDENT…

You should contact Peg--margaret.chaidez@... We have some reporters
that MAY be interested in following first time attendees (preferably local
to Philly area) around the convention. If you are a first time attendee or
a Philly resident that is attending first time convention, let me know if
you are interested being interviewed. The idea would be to follow you
around on Friday and get your commentary on the convention.



ATTENTION: AMC MOMMIES 

I am putting together a very special surprise for all us AMC mommies for
the Philly Convention. I would like to get a picture of each AMC mommy, by
yourself, if possible, any size picture will do, I can resize them. Please
e-mail me the picture to dijdheckert@... and please include your
name, your AMCer's name, and your city and state. Please also feel free to
include your favorite mommy quote (you do not have to, if you don't want).
I need all pictures no later than July 1, 2009 at noon. Let me know if you
have any questions.

Thanks, Doris (Mommy2Jackson)

P.S. Just wanted to add, even i
f you are not planning on attending
convention, please send me your mommy pics, I plan to post the show to
youtube after convention, so that all can enjoy!



AMC HAS TALENT!


Friday night at the convention will be a dinner and talent show.
Dance, sing, drum, tell jokes, break out your kazoo.
The more the merrier.

Think about what you can do to share in the fun.

Sign ups for the talent show will be coming soon.

Kids, we'll have opportunity for you to create a band with other kids,
during Friday's kid programming, if you are interested.

Reenee Donohoe











~Theresa Lucas
http://www.theresalucas.com

Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


[Non-text portions of this message have been removed]

Hi, My name is Jessica Chi, I am an Avon Representative, also a mom with a
AMCer, I want to help in anyway I can, Arthrogryposis Multiplex Congenita
Support, Inc?(http://www.amcsupport.org) had done so much for our kids and
parents. I have asked my friends to go to my website to place an order
of Avon products and a percentage of profit will be donated to the?AMC support
group.
my website is WWW.youravon.com/jchi

Best Regards,

Jessica


~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


[Non-text portions of this message have been removed]

Come to the rally being held tomorrow 7/15 at 11:30am in San Francisco! Tell the
Governor that we will not sit quietly as the State Budget goes up in smoke! We
will gather in front of the Governors office at 455 Gate Ave, SF.

Tell Governor Schwarzenegger to protect families by signing a
responsible budget


Middle Class families are suffering. Police and firefighters are facing
layoffs. Seniors, kids and people with disabilities are getting hit
hardest by the budget crisis. Rather than demonstrating leadership to
solve these historic problems, our Governor is puffing on cigars.


Join a coalition of seniors, educations, students, people with
disabilities, interfaith leaders, labor leaders and others.

Tracy Rousar added you as a friend on MyLife(TM).
                 Please confirm you know Tracy so we can connect you.

                 Do You Know Tracy?

		 YES - Connect with Tracy, and see who's searching for you
		
http://smtp26.mail.reunion.com:80/track?type=click&mailingid=172434&messageid=93\
00&databaseid=1238061970&serial=1228211830&emailid=amc_adults@yahoogroups.com&us\
erid=2486&extra=&&&2002&&&http://www.mylife.com/showInviteRegistration.do?uid=27\
4036195&invitee=amc_adults@yahoogroups.com

		 NO - I don't know Tracy
http://smtp26.mail.reunion.com:80/track?type=click&mailingid=172434&messageid=93\
00&databaseid=1238061970&serial=1228211830&emailid=amc_adults@yahoogroups.com&us\
erid=2486&extra=&&&2000&&&http://www.mylife.com/showInviteRegistration.do?unsub=\
true&invitee=amc_adults@yahoogroups.com&uid=274036195

		 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

		 MyLife - Find everyone. All in one place.(TM)

		 You have received this email because a MyLife member sent an invitation to
		 this email address. For assistance, please refer to our FAQ or Contact Us:
                
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erid=2486&extra=&&&2001&&&http://help.mylife.com/

		 Our Address: 2118 Wilshire Blvd., Box 1008, Santa Monica, CA 90403-5784

                 Copyright (c) 2009 MyLife.com, Inc. All Rights Reserved.


[Non-text portions of this message have been removed]

You can follow our journey to bring them home at
http://roadtoanastasia.blogspot.com/
also if anyone has words of advice or info on helping them once they arrive home
I am all ears!

My name is Kristen.  I have AMC (along with congenital muscular dystrophy), and
I am 30 years-old.  Recently, I have developed pain in my right knee and hip. 
After speaking to a doctor, he is suggesting a steoroid shot to buy time for
further surgery.  According to the x-rays, the hip has rotated in the socket,
which is supposedly causing the pain.  Has anyone else experienced this problem
around this age?  What treatment did you pursue, and was it beneficial?

Thanks,

Kristen

HI there, I am 49 and have AMC.  I had a total hip replacement last year and
it has resolved some pain but caused many other problems. I have scoliosis
as well and since the hip replacement, my curvature has gotten worse and I
have been losing feeling in my buttocks down my legs and in my ankles and
feet. This has been going on for many years very slowly but since the hip
replacement the numbness has gotten much worse.



I did meet someone at the rehab centre I went to after the surgery who also
had AMC and had his second hip replacement and he has had great results.  He
does walk where as I do not so I think not being ambulatory and having hip
replacement does not work!!



Everyone is so different with AMC and how healing goes varies.  I regret
having it done and  I will not get the other one done which is not as bad as
the first one.  The only thing really that came out of this, once the
surgeon went in he did say it was worse than what the x-ray showed so
eventually my hip would have dislocated or the femur would have broken.so
that is how I rationalize having it done..



The pain was worse than  could have imagined, took me forever to get pain
under control and then I went home after 3 and a half months at rehab and
got CDIF..the horrible intestinal infection caused by antibiotics in the
hospital because I ended up have a few bladder infections, so had to go on
antibiotics, I was back in the hospital for a month and that was 6 months
ago and I am still struggling with trying to get my weight back ( I lost 24
lbs, so was down to 87 lbs from 111 lbs before the surgery).  I can really
only work part time so far anyways and pretty much have no stamina.



It is such a crap shoot to get surgery at an older age. I honestly thought,
that so many people get hip replacements much older so that I would sail
through!! I only had surgeries when I was a teen ager (spine fusions) and
then one when I was a child to release my heel cord tendons.  SO I was very
lucky as a child with AMC having so few surgeries compared to so many who
have gone through so much.  So I thought I would be fine....not so much!!!



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of Kristen
Sent: July-18-09 12:42 PM
To: amc_adults@yahoogroups.com
Subject: [Adults AMC] Hip/Knee Pain as an Adult





My name is Kristen. I have AMC (along with congenital muscular dystrophy),
and I am 30 years-old. Recently, I have developed pain in my right knee and
hip. After speaking to a doctor, he is suggesting a steoroid shot to buy
time for further surgery. According to the x-rays, the hip has rotated in
the socket, which is supposedly causing the pain. Has anyone else
experienced this problem around this age? What treatment did you pursue, and
was it beneficial?

Thanks,

Kristen





[Non-text portions of this message have been removed]

Not trying to start anything. Just curious to know what other disabled people
have on their minds about this topic.
 
BTW, I highly recommend reading HR 3200, if you haven't already.
 
http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_bills&docid=f\
:h3200ih.txt.pdf
 
It takes a bit to load.

__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

[Non-text portions of this message have been removed]

Hello AMC Adults!
  I'm wondering if folks out there would be interested in forming a community
driven advocacy group here at the Berkeley CIL? I see the group as being a place
where people can hash out and work together to solve concerns big or small,
issues being faced around barriers to access and cervices, or simply the ever
deteriorating state of California. The group can take on whatever shape members
want it to.
  If anyone out there is interested in getting involved feel free to get in touch
with me. Once enough people show interest we can decide on an initial meeting
date to get to know each other and start tossing around ideas.
Look forward to hearing from you,
Lauren

I am 32 years old and was diagnosed with Arthrogryposis at birth.  I have
treated the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young.   Staying active and PT was always the
best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have.  My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have.  My brother did have a
heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated.  Thank you for your time. 
Dan

Hi, My name is Tiffany, I'm 33 and I have the worst type of AMC but I have a 13
year-old and a 10 year-old daughter and both are healthy as a horse. My son runs
in Track and my daughter dances. I did swim, play baseball, volley ball, and
I have won 12 blue ribbons in horse shows. I do not show anymore due to chronic
back pain
 
I recently had a collapsed lung and have found myself getting weaker in my legs.
I fall more then I ever have. I too need a doctor in the Illinois area to help
figure out exactly whats going on. I do walk more now due to my electric chair
dying on me three months ago and I can't push the manual. I have lost my medical
card so I can't get a new chair. I could use information on help to obtaining
one.
 
Thanks,
Tiny Tiger!

--- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:


From: dannyg887 <dannyg887@...>
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com
Date: Monday, September 14, 2009, 10:49 AM


 




I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated
the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young. Staying active and PT was always the best
treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have. My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have. My brother did have a
healthy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your time.
Dan



















[Non-text portions of this message have been removed]

I am 32 years old and was diagnosed with Arthrogryposis at birth.  I have
treated the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young.   Staying active and PT was always the
best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have.  My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have.  My brother did have a
heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated.  Thank you for your time. 
Dan

--- In amc_adults@yahoogroups.com, "dannyg887" <dannyg887@...> wrote:
>I too have amc. I have 2 kids. They are both healthy. My daughter has 2 of her
own and they are healthy. I know I am just one person but i just wanted to past 
this on to you. We went to a genetisis and we were told that our chances of
having normal children where lllike anyone elses. Take care .........Neal



























>
> I am 32 years old and was diagnosed with Arthrogryposis at birth.  I have
treated the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young.   Staying active and PT was always the
best treatment.
>
> I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have.  My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.
>
> I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have.  My brother did have a
heathy baby girl a year and a half ago.
>
> Any and all information will be greatly appreciated.  Thank you for your time.
Dan
>

Hi Dan,
 
My name is Morne, I'm 34 and I'm writing from South Africa. I am currently in
the process of finising a thesis on the social effects of arthrogryposis on such
individual (I'm studying towards a Masters degree in Research Psychology). I
live with mild arthrogryposis as well. Well, because of my thesis, I did a lot
of reading about A.M.C. Literature suggests that arthrogryposis is not an
heridetary condition. So, you can't pass it on to your kids. The fact that your
brother has a healthy little girl, bears testimony to that. I have read a lot
about other A.M.C.'ers who have healthy children. What I'll suggest is that you
read up a bit more on arthrogryposis or contact Avenues for some info. I hope
this helps.....
 
Good luck!
 
Kind regards
Morne
 
  

--- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:


From: dannyg887 <dannyg887@...>
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com
Date: Monday, September 14, 2009, 6:49 PM


 




I am 32 years old and was diagnosed with Arthrogryposis at birth. I have treated
the symptoms of Arthrogryposis like my scoliosis and related breathing
limitations all my life and never really concentrated on seeing a doctor for my
Arthrogryposis since i was very young. Staying active and PT was always the best
treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i can
get an updated diagnosis on the type I have. My wife and i are looking to have
children and want to make sure the chances are good that this is not something i
can pass to them.

I have read a lot that seems to make me think the form i have is not something
that can be passed down but my brother was born with clubbed feet and getting an
updated diagnosis is probably something good to have. My brother did have a
heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your time.
Dan



















[Non-text portions of this message have been removed]

HI Morne, I would love to read your thesis.  I don't have  masters in
Psychology but I do have a Bachelor's and I also have AMC.  It affects me
pretty significantly but I am independent, work, drive etc.  Is your thesis
going to be online at all?



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of morne vanWyk
Sent: September-18-09 7:10 AM
To: amc_adults@yahoogroups.com
Subject: Re: [Adults AMC] New York Area Doctor





Hi Dan,

My name is Morne, I'm 34 and I'm writing from South Africa. I am currently
in the process of finising a thesis on the social effects of arthrogryposis
on such individual (I'm studying towards a Masters degree in Research
Psychology). I live with mild arthrogryposis as well. Well, because of my
thesis, I did a lot of reading about A.M.C. Literature suggests that
arthrogryposis is not an heridetary condition. So, you can't pass it on to
your kids. The fact that your brother has a healthy little girl, bears
testimony to that. I have read a lot about other A.M.C.'ers who have healthy
children. What I'll suggest is that you read up a bit more on arthrogryposis
or contact Avenues for some info. I hope this helps.....

Good luck!

Kind regards
Morne



--- On Mon, 9/14/09, dannyg887 <dannyg887@... <mailto:dannyg887%40me.com>
> wrote:

From: dannyg887 <dannyg887@... <mailto:dannyg887%40me.com> >
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com>
Date: Monday, September 14, 2009, 6:49 PM



I am 32 years old and was diagnosed with Arthrogryposis at birth. I have
treated the symptoms of Arthrogryposis like my scoliosis and related
breathing limitations all my life and never really concentrated on seeing a
doctor for my Arthrogryposis since i was very young. Staying active and PT
was always the best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i
can get an updated diagnosis on the type I have. My wife and i are looking
to have children and want to make sure the chances are good that this is not
something i can pass to them.

I have read a lot that seems to make me think the form i have is not
something that can be passed down but my brother was born with clubbed feet
and getting an updated diagnosis is probably something good to have. My
brother did have a heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your
time. Dan

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Thank you for that info.

Dan Gentile
516.443.2041
Sent from my iPhone

On Sep 18, 2009, at 7:09 AM, morne vanWyk <vanwyk.morne@...>
wrote:

> Hi Dan,
>
> My name is Morne, I'm 34 and I'm writing from South Africa. I am
> currently in the process of finising a thesis on the social effects
> of arthrogryposis on such individual (I'm studying towards a Masters
> degree in Research Psychology). I live with mild arthrogryposis as
> well. Well, because of my thesis, I did a lot of reading about
> A.M.C. Literature suggests that arthrogryposis is not an heridetary
> condition. So, you can't pass it on to your kids. The fact that your
> brother has a healthy little girl, bears testimony to that. I have
> read a lot about other A.M.C.'ers who have healthy children. What
> I'll suggest is that you read up a bit more on arthrogryposis or
> contact Avenues for some info. I hope this helps.....
>
> Good luck!
>
> Kind regards
> Morne
>
>
>
> --- On Mon, 9/14/09, dannyg887 <dannyg887@...> wrote:
>
> From: dannyg887 <dannyg887@...>
> Subject: [Adults AMC] New York Area Doctor
> To: amc_adults@yahoogroups.com
> Date: Monday, September 14, 2009, 6:49 PM
>
>
>
> I am 32 years old and was diagnosed with Arthrogryposis at birth. I
> have treated the symptoms of Arthrogryposis like my scoliosis and
> related breathing limitations all my life and never really
> concentrated on seeing a doctor for my Arthrogryposis since i was
> very young. Staying active and PT was always the best treatment.
>
> I write to this group today to see if there is a doctor anywhere on
> the east coast, specifically the NYC Area, that specializes in
> Arthrogryposis that i can get an updated diagnosis on the type I
> have. My wife and i are looking to have children and want to make
> sure the chances are good that this is not something i can pass to
> them.
>
> I have read a lot that seems to make me think the form i have is not
> something that can be passed down but my brother was born with
> clubbed feet and getting an updated diagnosis is probably something
> good to have. My brother did have a heathy baby girl a year and a
> half ago.
>
> Any and all information will be greatly appreciated. Thank you for
> your time. Dan
>
> [Non-text portions of this message have been removed]
>
>


[Non-text portions of this message have been removed]

Hi Patty,
 
Well, I think that you'd have to go to our university's website to access it. I
actually wanted to publish it. I have spoken to my promotor about it. If so,
it'll definitely be online. So, we are still looking into such possibilities. I
regard this thesis as my 'baby' because I wanted to do a thesis on AMC to find
out how it affects others who have the same condition as myself.
 
Well, it is good to know that you are independent and that AMC doesn't control
your life. I can drive as well, but I don't have a drivers' licence. The reason
for that is that I keep putting it off. Can you believe that?!! LOL!!!
 
Cheers
Morne 

--- On Fri, 9/18/09, Patty Clarke <pelclarke@...> wrote:


From: Patty Clarke <pelclarke@...>
Subject: RE: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogroups.com
Date: Friday, September 18, 2009, 9:27 PM


 



HI Morne, I would love to read your thesis. I don't have masters in
Psychology but I do have a Bachelor's and I also have AMC. It affects me
pretty significantly but I am independent, work, drive etc. Is your thesis
going to be online at all?

Patty.

From: amc_adults@yahoogro ups.com [mailto:amc_adults@yahoogro ups.com] On
Behalf Of morne vanWyk
Sent: September-18- 09 7:10 AM
To: amc_adults@yahoogro ups.com
Subject: Re: [Adults AMC] New York Area Doctor

Hi Dan,

My name is Morne, I'm 34 and I'm writing from South Africa. I am currently
in the process of finising a thesis on the social effects of arthrogryposis
on such individual (I'm studying towards a Masters degree in Research
Psychology). I live with mild arthrogryposis as well. Well, because of my
thesis, I did a lot of reading about A.M.C. Literature suggests that
arthrogryposis is not an heridetary condition. So, you can't pass it on to
your kids. The fact that your brother has a healthy little girl, bears
testimony to that. I have read a lot about other A.M.C.'ers who have healthy
children. What I'll suggest is that you read up a bit more on arthrogryposis
or contact Avenues for some info. I hope this helps.....

Good luck!

Kind regards
Morne



--- On Mon, 9/14/09, dannyg887 <dannyg887@me. com <mailto:dannyg887% 40me.com>
> wrote:

From: dannyg887 <dannyg887@me. com <mailto:dannyg887% 40me.com> >
Subject: [Adults AMC] New York Area Doctor
To: amc_adults@yahoogro ups.com <mailto:amc_ adults%40yahoogr oups.com>
Date: Monday, September 14, 2009, 6:49 PM

I am 32 years old and was diagnosed with Arthrogryposis at birth. I have
treated the symptoms of Arthrogryposis like my scoliosis and related
breathing limitations all my life and never really concentrated on seeing a
doctor for my Arthrogryposis since i was very young. Staying active and PT
was always the best treatment.

I write to this group today to see if there is a doctor anywhere on the east
coast, specifically the NYC Area, that specializes in Arthrogryposis that i
can get an updated diagnosis on the type I have. My wife and i are looking
to have children and want to make sure the chances are good that this is not
something i can pass to them.

I have read a lot that seems to make me think the form i have is not
something that can be passed down but my brother was born with clubbed feet
and getting an updated diagnosis is probably something good to have. My
brother did have a heathy baby girl a year and a half ago.

Any and all information will be greatly appreciated. Thank you for your
time. Dan

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]

http://www.kare11.com/news/investigative/extras/extra_article.aspx?storyid=82456\
7&catid=26

Hi there,

I am 31 years-old, have AMC, and can walk.  Recently, I have been seeing an
orthopaedic specialist for hip and knee pain on the right side.  After a couple
of tests and visits, he is suggesting a hip replacement.  Have any of you had a
similar situation?  If so, how did you handle it, and what were the results?

Also, does anyone know of an orthopaedic doctor in Indianapolis who specializes
in working with patients with AMC?  This would help me.

Thanks,

Kristen

Kristen,

a friend of mine had 2 hip replacements & a knee replaced in Indianapolis & she
also has AMC. She went to Dr Fisher

http://davidafishermd.com/aboutdrfisher/aboutdrfisher.shtml



I also live in Indiana & have AMC! Where are you from? maybe we could do lunch
sometime!


~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


-----Original Message-----
From: chapkristen <chapkelarson@...>
To: amc_adults@yahoogroups.com
Sent: Mon, Sep 21, 2009 10:25 pm
Subject: [Adults AMC] Hip replacement?






Hi there,

I am 31 years-old, have AMC, and can walk. Recently, I have been seeing an
orthopaedic specialist for hip and knee pain on the right side. After a couple
of tests and visits, he is suggesting a hip replacement. Have any of you had a
similar situation? If so, how did you handle it, and what were the results?

Also, does anyone know of an orthopaedic doctor in Indianapolis who specializes
in working with patients with AMC? This would help me.

Thanks,

Kristen








[Non-text portions of this message have been removed]

Hi Kristen,

I am 53 and had a total left hip replacement in 1990. I had 2 surgeries as a
child for severe dislocated hip. This was the best thing I ever did for myself,
it really added to my mobility and completely got rid of my hip and sciatic
pain. It was done by Dr. Goodman at Stanford Univ. Hospital.

Best of luck to you,
Kathleen
Lincoln, CA


>
> -----Original Message-----
> From: chapkristen <chapkelarson@...>
> To: amc_adults@yahoogroups.com
> Sent: Mon, Sep 21, 2009 10:25 pm
> Subject: [Adults AMC] Hip replacement?
>
>
>
>
>
>
> Hi there,
>
> I am 31 years-old, have AMC, and can walk. Recently, I have been seeing an
orthopaedic specialist for hip and knee pain on the right side. After a couple
of tests and visits, he is suggesting a hip replacement. Have any of you had a
similar situation? If so, how did you handle it, and what were the results?
>
> Also, does anyone know of an orthopaedic doctor in Indianapolis who
specializes in working with patients with AMC? This would help me.
>
> Thanks,
>
> Kristen
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Hello Everyone:



Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!



https://www.formspring.com/forms/?578046-azDXdQGUmr



Thank you for your time!


Chris Johnson

AMCSI Voting member.







[Non-text portions of this message have been removed]

THANKS Chris!

Just to let everyone know, AMCSI's membership dues runs yearly from Jan-Dec. We
do not pro rate dues.

Also, You still can attend convention & join our forums (
http://www.amcsupport.org/forum ) for free without being a paid member!



~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator



-----Original Message-----
From: Chris Johnson <chris.johnson1@...>
To: Adults_With_Arthrogryposis@yahoogroups.com; Avenues2@yahoogroups.com;
Arthrogryposis@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
amc_adults@yahoogroups.com
Sent: Thu, Oct 22, 2009 5:27 pm
Subject: [Adults w/ AMC] AMCSI Membership






Hello Everyone:

Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!

https://www.formspring.com/forms/?578046-azDXdQGUmr

Thank you for your time!


Chris Johnson

AMCSI Voting member.

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]