Family Support Group

Welcome to Ups of Downs! Here you’ll find the latest pictures, news about the group, and upcoming events! Visit us regularly to see what we’re up to.

Our ultimate goal is to realize the complete acceptance and inclusion of individuals with Down Syndrome as to aspects of family and community life. We want to provide educational, charitable, recreational and social events for individuals with Down Syndrome and their family and friends.

Do you love the outdoors? Be like Jackson and pick up a free lifetime Access pass to over 2,000 National Parks! Allows vehicle he is in with occupants in free...includes 50% off camping and other perks. Super Easy!!! Just go to your local Ranger Station, show proof of disability (Dr. note) and form of ID: passport, DL, ID card or birth cirtificate. Took less than 5 min. More info below..click on Access pass. πŸŒ„πŸŒ…πŸ•πŸŒŽhttps://www.fs.fed.us/visit/passes-permits/recreation-fees-passes
* can also apply through mail...application found her.
www.nps.gov/planyourvisit/passes.htm#CP_JUMP_5088581
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Do you love the outdoors?  Be like Jackson and pick up a free lifetime Access pass to over 2,000 National  Parks! Allows vehicle he is in with occupants in free...includes 50% off camping and other perks. Super Easy!!! Just go to your local Ranger Station, show proof of disability (Dr. note) and form of ID: passport, DL, ID card or birth cirtificate. Took less than 5 min. More info below..click on Access pass. πŸŒ„πŸŒ…πŸ•πŸŒŽhttps://www.fs.fed.us/visit/passes-permits/recreation-fees-passes
* can also apply through mail...application found her.
https://www.nps.gov/planyourvisit/passes.htm#CP_JUMP_5088581Image attachmentImage attachment

 

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Barbara Lewis

Tina Urdahl Kristine Forrest

1 week ago

Ups of Downs Family Support Group

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2 weeks ago

Ups of Downs Family Support Group

CHECK IT OUT!!!! Your support to Ups of Downs Family Support Group helps make these amazing "Welcome" bags possible! When there is a new family who has a loved one with Down Syndrome they are given one of these awesome bags. Inside the family will find resources, information, a beautiful book called "Gifts", information about Ups of Downs Family Support and a welcome letter! * adding an additional book soon πŸ“˜* ... See MoreSee Less

CHECK IT OUT!!!! Your support to Ups of Downs Family Support Group helps make these amazing Welcome bags possible! When there is a new family who has a loved one with Down Syndrome they are given one of these awesome bags. Inside the family will find resources, information, a beautiful book called Gifts, information about Ups of Downs Family Support and a welcome letter! * adding an additional book soon πŸ“˜*

 

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Just love this!

2 weeks ago

Ups of Downs Family Support Group

Awesome! Thank you First Interstate Bank and South Dakota Gives!!!! #FirstInterstateBank #ForSouthDakotaWell this just raised us up! Congrats to Ups of Downs Family Support Group, the next random $250 winner from the South Dakota Gives Prize Pool. This hour was made possible thanks to the generosity of First Interstate Bank. ... See MoreSee Less

Awesome! Thank you First Interstate Bank and South Dakota Gives!!!! #FirstInterstateBank #ForSouthDakotaImage attachment

 

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Yay, 1st Interstate!

Wow, this is just wonderful and truly amazing, thank you First Interstate Bank!

Thank you First Interstate Bank!!!

2 weeks ago

Ups of Downs Family Support Group

#ForSouthDakota
#GivingTuesday
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#ForSouthDakota
#GivingTuesday

Check out our page on South Dakota Gives! South Dakota Day of Giving / Giving Tuesday, DEC 3, 2019
www.southdakotagives.org/ups-of-down-family-support-group
#forsouthdakota2am
#ForSouthDakota
#GivingTuesday
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Check out our page on South Dakota Gives! South Dakota Day of Giving / Giving Tuesday, DEC 3, 2019
https://www.southdakotagives.org/ups-of-down-family-support-group
#ForSouthDakota2am
#ForSouthDakota
#GivingTuesday

2 weeks ago

Ups of Downs Family Support Group

#ForSouthDakotaWell, heck. That $2,500 GOLDEN TICKET POWER HOUR was so much fun that we are DOING IT AGAIN RIGHT NOW! Get as many people as you can to SHARE or POST this image with #ForSouthDakota RIGHT NOW. One person who does so within the hour gets to pick the nonprofit who gets the money. ... See MoreSee Less

#ForSouthDakota

Pleas make sure you are checking your Spam box for emails from the group! ... See MoreSee Less

Enjoy this incredible slideshow made by one of our board members. Thank you Vanessa!!

www.kizoa.com/Movie-Video-Slideshow-Maker/d297312802k4874148o2l1/dswalk-2019

Film Montage : DSWalk 2019
Gratuit : créez des films, montages photo, et montages vidéo avec Kizoa - Partagez par email, Facebook, YouTube, Twitter, blog - Gravez sur DVD
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A huge THANK YOU to our sponsors, supporters, board/committee members, family and friends! The DS Awareness Walk wouldn’t be possible without you! ... See MoreSee Less

 

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Yes Thank you, thank you! thank you from the bottom of all of our hearts

2 months ago

Ups of Downs Family Support Group

The 2019 Down Syndrome Awareness Walk is this Saturday, October 5th inside the Rushmore Mall! We hope to see you there! Thank you for your support!

Registration 9:00-10:00AM
Walk Begins 10:30AM
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The 2019 Down Syndrome Awareness Walk is this Saturday, October 5th inside the Rushmore Mall! We hope to see you there! Thank you for your support!

Registration 9:00-10:00AM
Walk Begins 10:30AM

 

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Where will registration be in the mall?

Mona Jennifer Rhonda Vanessa

DS Awareness Walk is this Saturday!!! 9-12! At the mall! With every registration, you get to go to BH Battle Zone for free (on Oct. 5 from 12-2)! And, you get to eat breakfast catered by Caramel Creations! It’s gonna be AWESOME! Come support this incredible community we are lucky to be apart of! ... See MoreSee Less

DS Awareness Walk is this Saturday!!! 9-12! At the mall!  With every registration, you get to go to BH Battle Zone for free (on Oct. 5 from 12-2)! And, you get to eat breakfast catered by Caramel Creations! It’s gonna be AWESOME!  Come support this incredible community we are lucky to be apart of!

3 months ago

Ups of Downs Family Support Group

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πŸ’™October 5th, 2019πŸ’›

Are you interested in attending or being a sponsor for the 2019 Down Syndrome Awareness Walk? Send us a message πŸ“§ or drop a comment below and we will send you more information! Thank you for your continued support!
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πŸ’™October 5th, 2019πŸ’›

Are you interested in attending or being a sponsor for the 2019 Down Syndrome Awareness Walk?  Send us a message πŸ“§ or drop a comment below and we will send you more information!  Thank you for your continued support!

πŸ’™October 5th, 2019πŸ’›

Are you interested in attending or being a sponsor for the 2019 Down Syndrome Awareness Walk? Drop a comment below and we will send you more information!
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πŸ’™October 5th, 2019πŸ’›

Are you interested in attending or being a sponsor for the 2019 Down Syndrome Awareness Walk?  Drop a comment below and we will send you more information!

πŸŽͺ The Ups of Downs Family Support Group attended the Naja Shrine Circus last night. They put on a phenomenal performance that lit up both children and adults! ... See MoreSee Less

πŸŽͺ The Ups of Downs Family Support Group attended the Naja Shrine Circus last night. They put on a phenomenal performance that lit up both children and adults!

 

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Thank you so much! We had a great time!

8 months ago

Ups of Downs Family Support Group

🧩 Today is #WorldAutismAwarenessDay
#lightitupblueTomorrow! Join the movement and take the #LightItUpBlue pledge today: http://bit.ly/FBpledge
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🧩 Today is #WorldAutismAwarenessDay 
#LightItUpBlue

Ups of Downs Family Support Group
Wear fun socks on March 21st in support of World Down Syndrome day and your local Ups of Downs Family Support Group in the Black Hills! #upsofdownsfamilysupportgroup #worlddownsyndromeday #blackhillsbuddywalk
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Ready to rock....😊

Got mine on! :D

Join us in a fun and funky sock day on Thursday March 21st in support of World Down Syndrome Day! 🧦 πŸ’™πŸ’› ... See MoreSee Less

2018 Ups of Downs Buddy Walk! Thank you to everyone for attending and supporting us. We had a super fun time, had lots of things to do, and got to spend time with many family and friends that help us change lives for those who have changed our lives!
THANK YOU SO VERY MUCH!!
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RC Central & Stevens Drumline is here to start us off! ... See MoreSee Less

Capture memories of today’s Buddy Walk with Provet Inc Photo Booth! #bhbuddywalk2018 #buddywalk2018 ... See MoreSee Less

Capture memories of today’s Buddy Walk with Provet Inc Photo Booth! #bhbuddywalk2018 #buddywalk2018

 

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Thanks for coming! We loved the photo booth again this year.

It’s here - Buddy Walk Day! Our volunteers awaiting your arrival! #bhbuddywalk2018 ... See MoreSee Less

It’s here - Buddy Walk Day!  Our volunteers awaiting your arrival! #bhbuddywalk2018

1 years ago

Ups of Downs Family Support Group

Another successful Buddy walk!Another successful Buddy walk! ... See MoreSee Less

 

Comment on Facebook

Any T-shirt’s left ?

Good Buddy walk!

Just wonderful, thank you!

Setup has begun! Your board members and volunteers went right to work this afternoon! Thank you Ellsworth Air Force Base and students from SD School of Mines for donating your time and muscles! We appreciate you!! ... See MoreSee Less

Setup has begun! Your board members and volunteers went right to work this afternoon! Thank you Ellsworth Air Force Base and students from SD School of Mines for donating your time and muscles! We appreciate you!!

 

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Need to know where to go

All aboard!! πŸš‚ The train is returning to the Buddy Walk this year! Make sure to catch a ride this Saturday from 1:00-4:00! ... See MoreSee Less

All aboard!! πŸš‚ The train is returning to the Buddy Walk this year!  Make sure to catch a ride this Saturday from 1:00-4:00!

Have you heard? Live music from Phil Baker will be at the Buddy Walk! Come rock the sounds with Ups of Downs!
Saturday, Sept. 15th!
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πŸ₯πŸ₯
The Central and Stevens Highschool Drumlines will kick-off the Buddy Walk on Saturday !
You won’t want to miss this!
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We can't wait to see you Saturday September 15th for the Ups of Downs Buddy Walk at the Rushmore Plaza Civic Center Don Barnett Arena! Your committee volunteers and dedicated board members are hard at work preparing for the big day. What does your family enjoy most about the event?

First time at the Buddy Walk? Join us for the walk then enjoy bingo, bounce houses, a petting zoo and much, much more!

www.youtube.com/watch?v=CLt7znpIm4o&feature=youtu.beyoutube.com
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The 2018 Buddy Walk is 11 days away! We cannot wait to have you join us for a fun filled afternoon! We have also extended pre-registration to September 9th! Skip the line and get right to the fun! Follow this link to find the form with instructions upsofdowns.org/buddy-walk/ πŸ’›πŸ’™

youtu.be/CLt7znpIm4oyoutube.com
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πŸ”ΉπŸ”ΆπŸ”Ή
Pre-Registration for the Buddy Walk is available! Comment below if interested and we will message you the information!
πŸ”ΉπŸ”ΆπŸ”Ή
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Interested 😊

Interested :-)

Would live to attend!

2 years ago

Ups of Downs Family Support Group

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Come join us for supper at Pizza Ranch! Please bring your family and friends. We would love to share the evening with you.
Like pizza, chicken, or yummy cheese bread?
Then we have a place for you, come join us for supper Monday, January 22nd from 5-8pm at Pizza Ranch by Sam's Club.
he Ups of Downs have been asked to host again this year and since we had so much fun last year, we said yes and want you to join us for this fun night. Please bring your family and friends and let us wait on you! Looking forward to sharing the evening you.
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The 2017 Ups of Downs Buddy Walk Family Carnival & Dance is Saturday, September 9th from 10-2 at the Rushmore Plaza Civic Center - Barnett Arena. Come celebrate with us and help promote the inclusion, awareness, and acceptance of Down syndrome in our cummunity. Lots of smiles and fun. See you at the Buddy Walk! ... See MoreSee Less

3 years ago

Ups of Downs Family Support Group

The petting zoo was so awesome - we can't wait until next year! Thanks for attending.Yesterday we had our petting zoo at the Ups of Downs Family Support Group Buddy walk in Rapid City. Thank you for inviting us to play apart in your day! Lots of smiles and lots of fun. Enjoy the pics ... See MoreSee Less

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3 years ago

Ups of Downs Family Support Group

Lots of fun with Rhonda Grant and Mona Drolc at the buddy walk.Lots of fun ... See MoreSee Less

 

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Was perfect awesome day. The smiles, excitement, and fun is worth all the hard work.

Outstanding photos. Thanks for sharing

3 years ago

Ups of Downs Family Support Group

Set Up and Helpers ... See MoreSee Less

 

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Here Rhonda Grant for next year's fantastic buddy walk and carnival.

Love it!

3 years ago

Ups of Downs Family Support Group

Lots of fun ... See MoreSee Less

The 2016 Ups of Downs Buddy Walk Family Carnival & Dance is only 1 week away! This is so very exciting. Everyone is invited to attend and help promote the awareness of Down syndrome in our area. The event is Saturday, September 10th from 2-6pm at the Civic Center. We will have games, prizes, train rides, bingo, RC Park & Rec Funday obstacle course, our famous raffle, many visiting characters, a petting zoo and more. Can't forget lunch and the Buddy Walk itself! Looking so forward to seeing everyone for the wonderful event! ... See MoreSee Less

 

Comment on Facebook

Cannot wait!

Please share this with all your family and friends, we want to reach a goal of 100 shares and prizes for the person who is our 50th and our 100th. Please help us reach our goal!

2016 Ups of Downs Buddy Walk Family Carnival & Dance!
The Buddy Walk committee has been working hard on all the details for the Buddy Walk that is on Saturday, September 10th from 2-6 at the Civic Center, Rushmore Hall South.
You are invited to join us for this fun filled day of family activities, the walk, and our dance! We are also having our famous raffle!!
We are looking forward to seeing you, your family, and friends!
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2016 Ups of Downs Buddy Walk Family Carnival & Dance!
The Buddy Walk committee has been working hard on all the details for the Buddy Walk that is on Saturday, September 10th from 2-6 at the Civic Center, Rushmore Hall South.
You are invited to join us for this fun filled day of family activities, the walk, and our dance! We are also having our famous raffle!!
We are looking forward to seeing you, your family, and friends!
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Today is the day - the JUMP is here! We hope you can come join us for this wonderful event. The Ups of "Downs Dream Team" raised more than our goal - what an awesome team! Jumping begins around Noon but all the activities start at 10:00 with live music. Come to Harley Davidson, get an orange Buddy Walk shirt to show what team you are cheering for and have some fun with us. For those of you that made a donation - THANK YOU!!! We appreciate everyone's support. See you at the Polar Plunge! ... See MoreSee Less

The Ups of "Downs Dream Team" will be JUMPING for the Special Olympics Polar Plunge on Saturday, March 5th. We need more jumpers, donors, supporters, and everyone to cheers us on. Our team captain is Cara Vanberkum and she would love to hear from you if you can assist in any way. Let us know if you have any questions. ... See MoreSee Less

Have you been looking for that perfect vacation for the family?? A place where you can meet new people, have a TON of fun, visit exotic places, and GROW your knowledge and support of individuals with Down syndrome?? Contact me (Angie) if you need more information! ... See MoreSee Less

Have you been looking for that perfect vacation for the family?? A place where you can meet new people, have a TON of fun, visit exotic places, and GROW your knowledge and support of individuals with Down syndrome??   Contact me (Angie) if you need more information!

In just a few hours the Ups of Downs Annual meeting, Christmas party, and evening with Santa will begin! We are truly thankful for those attending and can't wait to see you. For those of you that are not able to attend - we will MISS YOU! If you plans changed for the day and want to come, we have room just let us know. ... See MoreSee Less

4 years ago

Ups of Downs Family Support Group

She looks so much like my Sierra ... See MoreSee Less

 

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4 years ago

Ups of Downs Family Support Group

So true, love it! ... See MoreSee Less

So true, love it!

 

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4 years ago

Ups of Downs Family Support Group

Buddy Walk 2015 ... See MoreSee Less

 

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Nice Picture Darcy.

So awesome, thank you to everyone involved in putting this wonderful event together. We gave a great time every year! :)

THANKS to everyone for attending the 2015 Ups of Downs Buddy Walk on Saturday! It was a great day and all the smiles truly show how much fun everyone had. If you have pictures please post. If you were not able to attend but want to support the group, we have t-shirts you can get. Let us know. Again, thanks to everyone for coming. ... See MoreSee Less

Buddy Walk is 3 days away with much to do but it always seem to get done. Looking forward to seeing everyone this year. Should you not be able to attend but want to support the walk and the group, you can donate, buy raffle tickets(great prizes again), get our famous Buddy Walk t-shirt. Please let us know if you have any questions. ... See MoreSee Less

4 years ago

Ups of Downs Family Support Group

These are a great idea!Print these out for your child with special needs so that they are able to experience "Trick or Treating" too... ... See MoreSee Less

These are a great idea!

 

Comment on Facebook

Buddy Walk is 2 weeks away! Looking forward to seeing everyone. A lot of activities have been planned for an exiting day. Emails have been sent with the registration form. It is also attached to our website, www.upsofdowns.org if you did not get the emails. Please pass this information to all you family & friends. All are invited to attend. Should you not be able to get the registration form, please let me know! ... See MoreSee Less

4 years ago

Ups of Downs Family Support Group

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2015 Ups of Downs Buddy Walk Family Carnival & Dance is Saturday, October 24th from 2-7pm at the Rushmore Paza Civic Center. Join us for a day filled with family fun, excitement, smiles and to groove with us!! Watch for more details.

Greetings! The Buddy Walk has been moved to Saturday October 24th! More details to follow. Please pass this onto everyone you know. Looking forward to seeing you! ... See MoreSee Less

Buddy Walk is around the corner! ... See MoreSee Less

 

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Buddy Walk is Saturday September 12th at the CC from 2-7. Having a dance this year!!!

When is it??

4 years ago

Ups of Downs Family Support Group

We had 10 individuals from our group along with the Strider gang participate in the SO Unified Relay Across America on Monday - it was an amazing time.The Special Olympics Unified Relay Across America was in STRIDERville today...we got to carry the torch! #UnifiedRelay #PassTheFlame ... See MoreSee Less

We had 10 individuals from our group along with the Strider gang participate in the SO Unified Relay Across America on Monday - it was an amazing time.

 

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Lifescape Summer Camps in Rapid City!



Scholarships are available for all camps. Call 605-791-7400 to register! Located at 7110 Jordan Drive, close to Catron and Mount Rushmore Road.



Power Reading and Spelling

Session 1: June 8-10, 15-17, 22-24; Session 2: July 6-8, 13-15, 21-22, 29; Cost: $350/Session, $600/Both Sessions; For K-5 kids who are struggling with any aspect of reading or spelling – or preschool-age kids who are at-risk. Sessions are 45 minutes long.



Kids Yoga Class

Thursdays: June 11, 18, 25, July 2; Younger kids (ages 4-7): 8:30-9:30 am, Older kids (ages 8-12): 10-11:00 am; Cost: $40/session (including a mat); Kids of all ability levels, and their parents, are encouraged to attend.



Extreme Speech

Mondays, Tuesdays, & Thursdays: Session 1: June 1-25, Session 2: July 6-30; 8 am-Noon; Cost: $300; Improve your child’s articulation skills – targeted at intelligibility and use of difficult sounds. Sessions are 30 minutes long.



Handwriting

July 13-23; Monday through Thursday; 8:30-10 am; Cost: $165; Small group for kids entering 1st/2nd grade to advance handwriting skills – using the Handwriting Without Tears curriculum. Eight total sessions are each 1.5 hours long.



Fit Kids

June 2-25, Tuesdays & Thursdays (Eight Sessions); 8-9 am; Cost: $120; Helping kids who are overweight – and their families – discover new ways to move and make a healthy lifestyle fun. A physical therapist will work with kids to develop daily fitness programs.
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Happy mothers day! ... See MoreSee Less

MORE ALIKE THAN DIFFERENT | March 21 World Down Syndrome Day | #MoreAlikeThanDifferentGigi's Playhouse: http://gigisplayhouse.org/newyork/ The National Down Syndrome Society: http://www.ndss.org/ Global Down Syndrome Foundation: http://www.glo... ... See MoreSee Less

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5 years ago

Ups of Downs Family Support Group

Looks good! Raising awareness!

Where Hope Grows
Check out the brand new trailer for WHERE HOPE GROWS, coming to theaters May 15th. Are you ready!?
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5 years ago

Ups of Downs Family Support Group

Awesome#NYC skyline is shining blue & yellow in honor of World Down Syndrome Day! #WDSD15 ... See MoreSee Less

Awesome

 

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Happy World Down Syndrome Day!
#worlddownsyndromeday
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Happy World Down Syndrome Day! 
#worlddownsyndromeday

5 years ago

Ups of Downs Family Support Group

Go Patti!!NDSS Director of State Government Affairs, Heather Sachs, is with NDSS Board Member, Patti Saylor, and Chairman of Special Olympics, Tim Shriver, in Annapolis today, meeting with legislators and talking with media about the Ethan Saylor Center bill! Sing the petition here: http://chn.ge/1B6iFJu ... See MoreSee Less

Go Patti!!

 

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5 years ago

Ups of Downs Family Support Group

Special Miracles - Down Syndrome
People with Down syndrome can be...
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5 years ago

Ups of Downs Family Support Group

SHARE!!!!!!!!!!!!!!!Spread the Word to End the Word. Today's the day to do just that. ... See MoreSee Less

SHARE!!!!!!!!!!!!!!!

 

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5 years ago

Ups of Downs Family Support Group

πŸ™‚A dream came true for this local fan! Christopher Warner got to meet his favorite band, Maroon 5! The 10-year-old had a bit of a panic attack meeting them, so the band laid down with him for this picture together. FOX 5's Jennifer Davis has more on the heartwarming story: http://bit.ly/1aIRKya (Photo: The KANE Show) ... See MoreSee Less

:)

 

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Registration is open for the 2015 National Down Syndrome Congress Convention! To be held in Phoenix AZ (cheap flights from Allegiant). June 26-28!! ... See MoreSee Less

5 years ago

Ups of Downs Family Support Group

Truth

Special Miracles - Down Syndrome
People with Down syndrome can be...
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Comment on Facebook

Love love. Must watch.Buy "True Colors" on iTunes! https://itunes.apple.com/us/album/true-colors-feat.-olivia-kay/id931070681?i=931070685 Hi BBoys & BGirls! Thanks for watching th... ... See MoreSee Less

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Happy new year! ... See MoreSee Less

5 years ago

Ups of Downs Family Support Group

Call your representative! We need to pass the senate! ... See MoreSee Less

Call your representative!   We need to pass the senate!

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Thank you to our special elves that helped us with our wonderful Christmas party and to Kat at the Rushmore Mall! ... See MoreSee Less

Thank you to our special elves that helped us with our wonderful Christmas party and to Kat at the Rushmore Mall!

Comment on Facebook

Yes, thank you! It was a wonderful event :)

5 years ago

Ups of Downs Family Support Group

Thanks to everyone who came to our party!Merry Christmas everyone! Special thanks to J1 Insoles for donating this beautiful cake for our Christmas party! ... See MoreSee Less

Thanks to everyone who came to our party!

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Merry Christmas everyone! Special thanks to J1 Insoles for donating this beautiful cake for our Christmas party! ... See MoreSee Less

Merry Christmas everyone!  Special thanks to J1 Insoles for donating this beautiful cake for our Christmas party!

5 years ago

Ups of Downs Family Support Group

Can you believe how beautiful she is? Story sound familiar to any of you?FOREVER LOVED SESSION: Please read, share and pray!! I would like you all to meet the sweet, 8 pound, 3 and a half month old, Carly. Carly was born July 22, 2014. Her mother Suzie had a normal pregnancy and went in for an AFP test. An AFP test is an alpha-fetoprotein blood test which tests for things such as Spina- Bifida, Anencephaly and can also be used for Trisomy conditions. Suzie, a Mother of 3, opted for an AFP screening while she was between 18-20 weeks into her pregnancy because it came with an early ultrasound and she wanted to know the sex of the baby sooner. She was expecting baby number 4! Typically for someone her age (28 at the time) they would expect the risk assessment to be something like 1:1700 (1 in 1700). Anything-below 1:200 (1 in 200) and they would really push for additional testing. Suzie’s test came back and was 1:6 (1 in 6). So when the results indicated that there may be a Trisomy condition (more commonly referred to as Down Syndrome or Edwards Syndrome) Suzie and her Husband opted for the additional testing. The couple did not request additional testing for abortive purposes, but to be better prepared in the incidence of a positive. Regardless of the diagnoses abortion was never an option for this couple. During the pregnancy Suzie explained to me that she had ultra sound, after ultra sound. Numerous testing and doctors visits. She never knew what her baby was going to look like. In these appointments they have a tendency to point out everything wrong with the child, and don’t often speak of any good. The journey of this pregnancy was extremely different than all of her others. Sweet Carly was born and like many Mothers, Suzie cried with joy. She also cried looking at her baby because she looked like her perfect newborn. She had 10 fingers, 10 toes, two eyes and adorable lips. Suzie and her husband, had no idea what to expect with her delivery because of all the negativity and caution they were subjected to during her pregnancy. Carly’s diagnoses: Congenital Heart Disease- 1 very large inlet Ventral Septal Defect (VSD), 2 smaller Atrial Septal Defects (ASD's), (all holes in her heart), Hypoplastic left ventricle, Hypoplastic aortic arch, Sandifer syndrome, Trisomy 21 (Down syndrome), Failure to Thrive and Hypothyroidism. What a diagnosis for such a perfect, tiny Angel. A hole in the septum between the heart's two upper chambers is called an Atrial Septal Defect (ASD). A hole in the septum between the heart's two lower chambers is called a Ventricular Septal Defect (VSD). Carly has both of these. The septum prevents mixing of blood between the two sides of the heart. In a lot of cases, smaller holes will even grow to close on their own. Carly’s case is extreme and the holes are so large and in such a location that blood flow is passing back and forth between the chambers and she is in complete heart failure. Because the risk of heart issues in children with Down syndrome is around 50%, their early diagnosis afforded us a lot of additional heart screenings. They discovered the Large VSD while she was still in utero with a Fetal Echocardiogram. They were also able to have a team of Cardiac Doctors and Surgeons available for her birth. Suzie and her husband had the chance to choose a hospital that was further away, but with a better NICU. They also knew that they were going to need to start her on heart medications right away. Suzie’s birthing process went so smoothly and instead of needing immediate surgery, they were able to postpone it for the last 3 and a half months! When Carly was just 1 month old, she started having what looked like mini-seizures. Her brain activity was normal, but they persisted. She started having complete Cyanotic episodes. Suzie found her in her cradle, blue after she started making a coughing/choking noise, but she quickly regained color after Suzie picked her up. Carly’s parents talked to the doctor and they said to expect a slight blue shade in Carly, due to her heart condition, but if she had another episode they would need to go in and have her seen. Unfortunately, this event happened again so Carly was admitted. She was in the hospital for 1 week when they determined that her acid reflux was a more severe form called Sandifer Syndrome. This condition affects 1% of cases of GERD. She would be in so much pain, that it would put so much additional stress on her heart that she would essentially forget to breathe. The Sandifer Syndrome was the underlying cause of the seizure like activity. It was also noted at that time, that Carly’s heart was rapidly getting worse. This left the Doctor’s with only one resolve and that was to increase her heart medication. Carly’s heart was deteriorating quickly. The doctors wanted to perform the necessary surgery, but wanted Carly to gain a little weight first. This would also enable them with precious time to get her reflux under control. The reflux would have made her recovery process worse. The Doctor’s decided to take an aggressive approach in treating her reflux, so they paired two medications together. Today is a huge day for baby Carly! It’s SURGERY day! As a matter of fact she is in surgery right now!! Open-heart surgery is expected to be 5 to 8 hours long. She is still considered Failure to Thrive and, because of all of this, a difficult recovery is to be expected. I am asking you all for your prayers today. Carly is in need of this surgery to be successful in order for her to have a chance at living the beautiful life she was meant for. Carly’s family is hopeful and praying for a positive outcome. Sweet Carly has two older sisters and a big brother also praying for her surgery today. I also would like to add that I believe we need to change the stigma of Down Syndrome and raise awareness toward the condition! They’re just rockin’ an extra chromosome and I think they rock it well! We should be coming together for more research into what makes these beautiful children unique. Suzie told me this morning heading into surgery, "You are truly an amazing spirit and our family is so grateful for the pictures. Years from now when she's all better, I look forward to being able to show her them." I CANNOT do these sessions alone, I need your help. If you have not watched Love Song’s campaign video please do so. http://youtu.be/0hnmJ2LZnYk If you feel compelled to buy a shirt you may do so here- These shirts will fund these sessions FREE of charge for these families in need. https://represent.com/team-love-song Here is the Team Carly Jean page-- https://www.facebook.com/Teamcarlyjean?frekkf=nf Her gofundme: http://www.gofundme.com/fvtods LIKE Love Song Events & Photography to follow up with this sweet client and many other clients of mine who wish to share their journeys with you. www.lovesongphotography.com - Southern California Photographer ... See MoreSee Less

 

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Beautiful!!

She is so beautiful ! My son is also Down syndrome and had a lot of the same heart problems ! And he wasn't expected to live . For three months dr's told us he was not gonna live and on Sunday he celebrated his 27 th birthday !

5 years ago

Ups of Downs Family Support Group

Nice job Lindsey with Love Song.DID YOU KNOW?? 90% of babies diagnosed with Down Syndrome are aborted? How sad and terrifying to think that this is the world we live in. One in every 691 babies in the the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year. The movie Produce: Where Hope Grows is trying to change the way the world sees people with Down syndrome. This will be in theaters in 2015, and I honestly can't wait! What an amazing film you can watch with your family. Go check out their LIKE their page, watch the trailer and support someone who is trying to make a difference. October is Down Syndrome awareness month, so let's break negative stereotypes together! LIKE Love Song Events & Photography for bookings and specials www.lovesongphotography.com - Southern California Photographer ... See MoreSee Less

Nice job Lindsey with Love Song.

 

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5 years ago

Ups of Downs Family Support Group

How doesn't love this!!Such a sweet picture of our Hugs + Mugs mentors Christine and Chris with baby Christian today at #gigifest14. ... See MoreSee Less

How doesnt love this!!

 

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