Photo I went to that CHARGE conference last weekend! (with pics) (1 Viewer)

[ChiaraStar169]

^Title^ It started with like a 6 or 6am flight to Dallas, and then another one to Phoneix. We checked into the resort the conference was being held at and spent some time at the pool there.

That night, we had a "welcome" reception at dinner, where we all colored phoenix feathers.

Side A:

Side B:

It was to be pinned on a large image of a phoenix. We did this to represent "rising up like a phoenix" from our challenges.

The second and third days consisted of different sessions about managing your disability - eye issues, balance issues, and living independently were three of them, but there were so many more!

The last day was pretty chill bc my caregiver and I were getting ready to leave for a 2pm flight home. But I did get some pics of the shrubbery outside of the hotel.

Saguaro cacti:

Wildflowers:

Another cactus:

(and I was today years old when I realized my finger was in the bottom right corner lol oh well...)

All in all, the conference was a lot of fun. I even met a fellow Swiftie with CHARGE! It was during an end-of-conference glow dance, and the song that was playing was Love Story. I still remember our mutual excitement as we held hands and sang along. We're now FB friends.

Oh, but the flight home, though! That's another story in and of itself, though, and I don't want it to overshadow the conference stuff, so that's for another thread.

 

[Ahsoka]

It sounds like it was a great opportunity

 

[ChiaraStar169]

It sounds like it was a great opportunity

oh, it was!

 

[dark_tranquility]

^Title^ It started with like a 6 or 6am flight to Dallas, and then another one to Phoneix. We checked into the resort the conference was being held at and spent some time at the pool there.

That night, we had a "welcome" reception at dinner, where we all colored phoenix feathers.

Side A:

Side B:

It was to be pinned on a large image of a phoenix. We did this to represent "rising up like a phoenix" from our challenges.

The second and third days consisted of different sessions about managing your disability - eye issues, balance issues, and living independently were three of them, but there were so many more!

The last day was pretty chill bc my caregiver and I were getting ready to leave for a 2pm flight home. But I did get some pics of the shrubbery outside of the hotel.

Saguaro cacti:

Wildflowers:

Another cactus:

(and I was today years old when I realized my finger was in the bottom right corner lol oh well...)

All in all, the conference was a lot of fun. I even met a fellow Swiftie with CHARGE! It was during an end-of-conference glow dance, and the song that was playing was Love Story. I still remember our mutual excitement as we held hands and sang along. We're now FB friends.

Oh, but the flight home, though! That's another story in and of itself, though, and I don't want it to overshadow the conference stuff, so that's for another thread.

what's a charge conference.
like you meet people and then what

 

[athenaaa]

It sounds like you had a great time. And the cactus pictures are so cool!

 

[centen]

It looks amazing! And the scenery looks so beautiful. I'm glad you had a wonderful time.

 

[rayhere]

omg I'm from Arizona whatttttt

^Title^ It started with like a 6 or 6am flight to Dallas, and then another one to Phoneix. We checked into the resort the conference was being held at and spent some time at the pool there.

That night, we had a "welcome" reception at dinner, where we all colored phoenix feathers.

Side A:

Side B:

It was to be pinned on a large image of a phoenix. We did this to represent "rising up like a phoenix" from our challenges.

The second and third days consisted of different sessions about managing your disability - eye issues, balance issues, and living independently were three of them, but there were so many more!

The last day was pretty chill bc my caregiver and I were getting ready to leave for a 2pm flight home. But I did get some pics of the shrubbery outside of the hotel.

Saguaro cacti:

Wildflowers:

Another cactus:

(and I was today years old when I realized my finger was in the bottom right corner lol oh well...)

All in all, the conference was a lot of fun. I even met a fellow Swiftie with CHARGE! It was during an end-of-conference glow dance, and the song that was playing was Love Story. I still remember our mutual excitement as we held hands and sang along. We're now FB friends.

Oh, but the flight home, though! That's another story in and of itself, though, and I don't want it to overshadow the conference stuff, so that's for another thread.

omggg I'm from Arizona

 

[ChiaraStar169]

what's a charge conference.
like you meet people and then what

and then you CHARGE into that new relationship ore friendship! haha /j

no, it's a conferenxce for people with CHARGE syndrome, a rare disorder caused by a mutation of the CHD7 gene.

Spoiler: potentially more info than you bargained for

People with CHARGE have been diagnosed at varying stages of life (one girl I met didn't get diagnosed until 30!), and it's considreed an umbrella term for:
Coloboma (I have coloboma of the optic nerve)
Heart defect (PDA for me)
Atresia (they refer to choanal atresia, but I believe it can be an atresia of any kind. I have an esophageal atresia that I'm having fixed on the 8th)
Restricted growth/development (well, it really stands for the OTHER R word, but restricted is another word you can use that's way nicer)
Genital and/or urinary abnormalities (I have both - small geitalia and a bladder 3x normal size)
Ear abnormalities (I have irregularly shaped ears and thus cannot wear earbuds. thank God for Bluetooth hearing aids! lol)

but I also have other characteristics:

facial palsy (left side) - this results in a crooked smile like this ( :/ )
drooping face (also left side, but I had that worked on in 2004)
deviated septum (this has also been treated)
drooping eyelid(s) (right eye - they call it ptosis)
micropthalmia (left eye is about half the size of the right eye)
legal blindness (my eyesight is 20/200, and I use a cane to get around)
balance issues / wide-set gait

and others, but it's a laundry list lol

here's the foundations website for more info:

Charge Syndrome Foundation

The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its cause and management.

www.chargesyndrome.org

 

[ChiaraStar169]

It sounds like you had a great time. And the cactus pictures are so cool!

It looks amazing! And the scenery looks so beautiful. I'm glad you had a wonderful time.

ty both!

 

[ChiaraStar169]

omg I'm from Arizona whatttttt

omggg I'm from Arizona

seriously??? where?

 

[rayhere]

seriously??? where?

Gilbert but its in the phoenix area

 

[ChiaraStar169]

Gilbert but its in the phoenix area

shut the front door! talk about a missed connection lol

 

[rayhere]

shut the front door! talk about a missed connection lol

lolll imagine we saw eachother tho

 

[dark_tranquility]

and then you CHARGE into that new relationship ore friendship! haha /j

no, it's a conferenxce for people with CHARGE syndrome, a rare disorder caused by a mutation of the CHD7 gene.

Spoiler: potentially more info than you bargained for

People with CHARGE have been diagnosed at varying stages of life (one girl I met didn't get diagnosed until 30!), and it's considreed an umbrella term for:
Coloboma (I have coloboma of the optic nerve)
Heart defect (PDA for me)
Atresia (they refer to choanal atresia, but I believe it can be an atresia of any kind. I have an esophageal atresia that I'm having fixed on the 8th)
Restricted growth/development (well, it really stands for the OTHER R word, but restricted is another word you can use that's way nicer)
Genital and/or urinary abnormalities (I have both - small geitalia and a bladder 3x normal size)
Ear abnormalities (I have irregularly shaped ears and thus cannot wear earbuds. thank God for Bluetooth hearing aids! lol)

but I also have other characteristics:

facial palsy (left side) - this results in a crooked smile like this ( :/ )
drooping face (also left side, but I had that worked on in 2004)
deviated septum (this has also been treated)
drooping eyelid(s) (right eye - they call it ptosis)
micropthalmia (left eye is about half the size of the right eye)
legal blindness (my eyesight is 20/200, and I use a cane to get around)
balance issues / wide-set gait

and others, but it's a laundry list lol

here's the foundations website for more info:

Charge Syndrome Foundation

The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its cause and management.

www.chargesyndrome.org

wowwwww that's on another level
I am glad you enjoyed yourself
stoked for you