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Faces of Glycogen Storage Disease

Here is a video montage that was just put together by one of our GSD families for an upcoming fundraiser.  It will really change your prospective by putting a face to the disease. 

Source: youtu.be

    • #Awareness
    • #University of Florida
    • #Video
    • #Weinstein
    • #CureGSD
  • 1 month ago
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Rare Disease Day 2012
-from press release
AverysHope.org will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases.
“This is a global observance,” said Peter L. Saltonstall, president and CEO of NORD. “Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives.”
The challenges of living with a rare disease, he said, include:
Difficulty getting a timely, accurate diagnosis
Too little research
Too few treatments
Reimbursement or other issues affecting access to treatments
A sense of isolation
Difficulty finding medical experts
In the U.S., any disease affecting fewer than 200,000 Americans is considered rare. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.
Studies have shown that it often takes five years or longer to get an accurate diagnosis of a rare disease. In addition, only about 200 of the diseases classified as rare have approved treatments.
Rare Disease Day started in Europe in 2008. It was launched by EURORDIS (Rare Diseases Europe). Last year, it was observed in more than 60 countries, with a national sponsor in each country. NORD is the sponsor in the U.S.
More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (www.rarediseaseday.us).
Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2012 is “Rare but strong together.”
Rare Disease Day activities in the U.S. will include a “Handprints Across America” campaign to create a gallery of photos on the Rare Disease Day website; educational materials for classroom teachers; and a nationwide blitz of patient photos, stories and videos to increase awareness of specific rare diseases and the challenges of living with a rare disease.
Several special events are planned, including a scientific symposium at the National Institutes of Health (NIH) and a Rare Disease Patient Advocacy Day at the Food and Drug Administration (FDA).
“Since many of these diseases are genetic, more than half of the people who have rare diseases are children” Saltonstall said. “The problems encountered by families are enormous. It’s important for these families to know they are not alone.”
For more information, please visit rarediseaseday.us or rarediseaseday.org.
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Rare Disease Day 2012

-from press release

AverysHope.org will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases.

“This is a global observance,” said Peter L. Saltonstall, president and CEO of NORD. “Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives.”

The challenges of living with a rare disease, he said, include:

  • Difficulty getting a timely, accurate diagnosis
  • Too little research
  • Too few treatments
  • Reimbursement or other issues affecting access to treatments
  • A sense of isolation
  • Difficulty finding medical experts

In the U.S., any disease affecting fewer than 200,000 Americans is considered rare. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.

Studies have shown that it often takes five years or longer to get an accurate diagnosis of a rare disease. In addition, only about 200 of the diseases classified as rare have approved treatments.

Rare Disease Day started in Europe in 2008. It was launched by EURORDIS (Rare Diseases Europe). Last year, it was observed in more than 60 countries, with a national sponsor in each country. NORD is the sponsor in the U.S.

More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (www.rarediseaseday.us).

Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2012 is “Rare but strong together.”

Rare Disease Day activities in the U.S. will include a “Handprints Across America” campaign to create a gallery of photos on the Rare Disease Day website; educational materials for classroom teachers; and a nationwide blitz of patient photos, stories and videos to increase awareness of specific rare diseases and the challenges of living with a rare disease.

Several special events are planned, including a scientific symposium at the National Institutes of Health (NIH) and a Rare Disease Patient Advocacy Day at the Food and Drug Administration (FDA).

“Since many of these diseases are genetic, more than half of the people who have rare diseases are children” Saltonstall said. “The problems encountered by families are enormous. It’s important for these families to know they are not alone.”

For more information, please visit rarediseaseday.us or rarediseaseday.org.

Source: rarediseaseday.us

    • #Rare Disease Day
    • #Awareness
  • 3 months ago
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Every Minute Counts.
Please visit Crazy Days Designs to purchase your very own “Every Minute Counts” pendant and chain.
The hand stamped washer and 24” ball chain necklace are made of stainless steel and the alarm clock is sterling silver.  The price is $30.00 plus $5.00 s/h and all proceeds from the sale of these pendants will be used for Glycogen Storage Disease research.  These pendants are “hand made with love, just for you!” by a mother of two little GSD boys, so she definitely knows the meaning of Every Minute Counts.
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Every Minute Counts.

Please visit Crazy Days Designs to purchase your very own “Every Minute Counts” pendant and chain.

The hand stamped washer and 24” ball chain necklace are made of stainless steel and the alarm clock is sterling silver.  The price is $30.00 plus $5.00 s/h and all proceeds from the sale of these pendants will be used for Glycogen Storage Disease research.  These pendants are “hand made with love, just for you!” by a mother of two little GSD boys, so she definitely knows the meaning of Every Minute Counts.

Source: facebook.com

    • #GSD
    • #Glycogen Storage Disease
    • #Awareness
    • #Fundraiser
    • #Crazy Days
    • #Jewelry
  • 3 months ago
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At 9 months old, Avery Robinson got a diagnosis that just three decades ago would have been a death sentence.
Avery has glycogen storage disease, a disease so rare that only one  other child in the state of Mississippi is thought to have it, according  to Avery’s doctors and parents.
The rare genetic disorder is marked by her body’s inability to  produce an enzyme that allows her to maintain blood sugar levels. As a  result, Avery has to eat or be fed every two waking hours or every four  hours when asleep. She risks dangerous build-ups of lactate, uric acid  and triglycerides leading to impaired breathing, seizures and coma if  her strict regimen is disturbed in any way.
She has never eaten fruit, simple sugars or dairy. And at age 4,  Avery, who lives in Hernando, knows more about GSD than even some of the  local medical community.
“I have to wait now because in a minute I have to have my cornstarch,” she said before heading off to gymnastics.
Cornstarch, which is slowly digested, is a major staple in Avery’s  life. She eats it to maintain her blood sugar between her carefully  planned meals. When she is going to be active, she eats a little more  than usual.
Just looking at her, it’s hard to tell she is sick. Credit for that  goes to her parents, Adam and Nikki Robinson, and Dr. David Weinstein at  the University of Florida, the leading authority on the disease.
With about 400 patients, Weinstein said he treats about 90 percent of  the cases diagnosed in the U.S. as well as treating patients from 28  other countries.
“Prior to 1971, it was fatal and even as late as 10 years ago, many  children weren’t surviving. That’s why I have made this my life’s work,”  he said.
Weinstein has run the GSD research program at the University of  Florida for the past seven years. His research has been focused on  finding a treatment that minimizes the disease in his patients’ lives.  He has already accomplished this in the lab.
“There is a breed of dog in which this condition is naturally  occurring, and we have successfully treated them and they are now living  very normal lives,” he said.
Weinstein said he hopes to apply for FDA permission to begin his gene  therapy treatment in humans  in the next one to two years. He believes  that the gene therapy treatment will make the disease a very minor part  of the children’s lives.
“Avery is thriving because of Dr. Weinstein’s work on GSD,” Adam said. “And the thing is, he is close to a treatment.”
The rarity of the disease is what led the Robinsons to start Avery’s  Hope Fund. It’s designed to raise public awareness so they will help  fund Weinstein’s research.
“Because GSD is so rare, it gets no federal funding and unlike  autism, cancer or diabetes, no one has heard of it. How do you raise  funds for something no one has heard of? We had never heard of it before  Avery was diagnosed with it,” Adam said.
Now, there is not an aspect of the disease the Robinsons are not  familiar with, out of necessity. Any sign of something like a stomach  flu in Avery’s case is life-threatening. If she vomits, her parents have  less than two hours to hook up a pump directly to a port in her stomach  to maintain her blood sugar. If they are unable to for any reason, the  next step is hospitalization.
“We have had to call paramedics and they always first think to give  Avery glucagon like they would low blood sugar in a diabetic, but  Avery’s body can’t take that. In fact, it could raise her lactate levels  so high it could kill her,” Nikki said.
But the Robinsons are quick to point out that none of the money  donated to Avery’s Fund is for Avery’s care; they have that well in  hand. The fund’s goal is to make Weinstein’s research and the gene  therapy treatment a reality for everyone with GSD.
Since the Robinsons began the fund last summer, they have raised  $15,000. Adam estimates it will cost about $3 million raised by funds  like Avery’s before the human trials can begin.
For more information on GSD or donate to Avery’s Hope Fund, visit averyshope.org.
Photo Credit: Stan Carroll
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At 9 months old, Avery Robinson got a diagnosis that just three decades ago would have been a death sentence.

Avery has glycogen storage disease, a disease so rare that only one other child in the state of Mississippi is thought to have it, according to Avery’s doctors and parents.

The rare genetic disorder is marked by her body’s inability to produce an enzyme that allows her to maintain blood sugar levels. As a result, Avery has to eat or be fed every two waking hours or every four hours when asleep. She risks dangerous build-ups of lactate, uric acid and triglycerides leading to impaired breathing, seizures and coma if her strict regimen is disturbed in any way.

She has never eaten fruit, simple sugars or dairy. And at age 4, Avery, who lives in Hernando, knows more about GSD than even some of the local medical community.

“I have to wait now because in a minute I have to have my cornstarch,” she said before heading off to gymnastics.

Cornstarch, which is slowly digested, is a major staple in Avery’s life. She eats it to maintain her blood sugar between her carefully planned meals. When she is going to be active, she eats a little more than usual.

Just looking at her, it’s hard to tell she is sick. Credit for that goes to her parents, Adam and Nikki Robinson, and Dr. David Weinstein at the University of Florida, the leading authority on the disease.

With about 400 patients, Weinstein said he treats about 90 percent of the cases diagnosed in the U.S. as well as treating patients from 28 other countries.

“Prior to 1971, it was fatal and even as late as 10 years ago, many children weren’t surviving. That’s why I have made this my life’s work,” he said.

Weinstein has run the GSD research program at the University of Florida for the past seven years. His research has been focused on finding a treatment that minimizes the disease in his patients’ lives. He has already accomplished this in the lab.

“There is a breed of dog in which this condition is naturally occurring, and we have successfully treated them and they are now living very normal lives,” he said.

Weinstein said he hopes to apply for FDA permission to begin his gene therapy treatment in humans in the next one to two years. He believes that the gene therapy treatment will make the disease a very minor part of the children’s lives.

“Avery is thriving because of Dr. Weinstein’s work on GSD,” Adam said. “And the thing is, he is close to a treatment.”

The rarity of the disease is what led the Robinsons to start Avery’s Hope Fund. It’s designed to raise public awareness so they will help fund Weinstein’s research.

“Because GSD is so rare, it gets no federal funding and unlike autism, cancer or diabetes, no one has heard of it. How do you raise funds for something no one has heard of? We had never heard of it before Avery was diagnosed with it,” Adam said.

Now, there is not an aspect of the disease the Robinsons are not familiar with, out of necessity. Any sign of something like a stomach flu in Avery’s case is life-threatening. If she vomits, her parents have less than two hours to hook up a pump directly to a port in her stomach to maintain her blood sugar. If they are unable to for any reason, the next step is hospitalization.

“We have had to call paramedics and they always first think to give Avery glucagon like they would low blood sugar in a diabetic, but Avery’s body can’t take that. In fact, it could raise her lactate levels so high it could kill her,” Nikki said.

But the Robinsons are quick to point out that none of the money donated to Avery’s Fund is for Avery’s care; they have that well in hand. The fund’s goal is to make Weinstein’s research and the gene therapy treatment a reality for everyone with GSD.

Since the Robinsons began the fund last summer, they have raised $15,000. Adam estimates it will cost about $3 million raised by funds like Avery’s before the human trials can begin.

For more information on GSD or donate to Avery’s Hope Fund, visit averyshope.org.

Photo Credit: Stan Carroll

Source: commercialappeal.com

    • #In The News
    • #Avery's Hope
    • #Awareness
    • #University of Florida
    • #Weinstein
  • 3 months ago
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Scentsy

We are now Scentsy Independent Consultants and 100% of our commission will benefit Glycogen Storage Disease research. Scentsy products provide a better, safe alternative to traditional wicked candles because the highly fragrant wax is heated in a Scentsy ceramic warmer with only a light bulb, reducing the risk of fire, burns, and the release of soot and toxins into your home; And with over 80 distinctive, long lasting Scentsy fragrances available, so you are surely to find a scent that you will love.

We are excited about the opportunity to share these great Scentsy products with you and also support a cause close to our hearts.

Buy Scentsy Products Online!

Source: AverysHope.Scentsy.us

    • #Fundraiser
    • #Scentsy
    • #GSD
    • #Glycogen Storage Disease
  • 3 months ago
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Woman Must Eat Cornstarch to Stay Alive

GREENWOOD VILLAGE, Colo. (CBS4) - A young wife and mother with a potentially deadly disease is looking for help finding a cure. All her life she’s had to stick to a strict diet to stay healthy and that includes plenty of corn starch.

Heather Edwards must stick to a strict diet with no fruit, no milk and no candy. Her liver cannot process the sugars. She suffers from what is called Glycogen Storage Disease or GSD.

GSD is a rare genetic disorder that affects the way the body breaks down food into energy.

Edwards was diagnosed with the GSD when she was only four months old. She needed a feeding tube to get nutrition and maintain her blood sugar. The simple answer to the complicated problem was corn starch.

“Corn starch is basically a complex carbohydrate that breaks down really slowly through your intestines versus your liver,” said Edwards.

Every day Edwards prepares six doses. She mixes corn starch with water and drinks it every few hours, even in the middle of the night. She could die if she doesn’t drink the corn starch.

Edwards said GSD is so rare she is literally one in a million people. She has a cupboard filled with corn starch and always carries some with her.

“I like to think of myself as a role model and try to help the families with younger kids out there to give them hope,” said Edwards.

Edwards and her husband, Jonathan, have started a foundation to fund research to find better treatments and a cure for GSD.

She travels to Florida once a year to see a specialist and has set up a donation site through the University of Florida named after her daughter, Hailey. (Hailey’s Promise)

Source: denver.cbslocal.com

    • #In The News
    • #GSD
    • #Awareness
    • #Video
    • #Glycogen Storage Disease
  • 4 months ago
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Gly
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(via Collinsville Family Prays For A Cure For Children’s Rare Disease)

COLLINSVILLE, Oklahoma -

Everyone with children remembers those overnight feedings, and of course, we remember when they ended. But what if they didn’t end?

One parent is up every two or three hours every night for the foreseeable future, that’s what life is like for a Collinsville family. Their two younger children require regular feedings every three hours of every night. Wait until you hear what they are eating.

They are the Marshalls’ kids from Collinsville, sisters Kamilynn, and Brynlee, brothers Beckett and Harrison, ages 7 to 20 months.

You’d never know it, but the boys have a very rare disease called Glycogen Storage Disease. Their livers don’t process sugar properly, so without a regular supplement, the supplement is corn starch.

“This is what we go through in about two days,” Amy Marshall said.

It keeps their blood sugar at a consistent level. The Marshalls buy it by the case at Sam’s Club, a simple sounding answer to a very complex problem.

“They couldn’t just eat more often, the food is not enough, the corn starch is what they need,” Ryan Marshall said.

Not just an occasional supplement, they showed us the schedule. A prescribed amount mixed with cold water, every two or three hours of everyday, conceivably forever.

“They’ve fallen through the cracks of the system,” Ryan said.

Because there are so few cases, only one other in Oklahoma agencies that might provide assistance have to become educated. The Marshalls say the process is endless.

The kids’ immune systems are weaker, so germs are a problem.

“We try to stay out of public places,” Amy said.

Even minor illnesses can result in a hospital stay. Daily routine is onerous enough. Every night, they put together an “overnight basket” pre-measured containers for each boy. They’ve got to check blood sugar ever two hours too.

The Marshalls hope and pray for a cure. Until then, they do all they can to ensure the kids are as healthy and happy as possible.

Source: newson6.com

    • #Awareness
    • #GSD
    • #In The News
    • #Video
    • #Glycogen Storage Disease
  • 4 months ago
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Thank You SEC
We would like to thank Commissioner Mike Slive and his staff at the  Southeastern Conference (SEC) for generously donating the autographed SEC coaches ball to Avery’s Hope Fund.  The football was signed by the 12 coaches of the Southeastern Conference during the 2011 SEC Media Days.
By selling raffle tickets, we were able to raise $5200 dollars that  will be used for Glycogen Storage Disease research at the the University  of Florida.
We would also like to take a moment to thank Associate Director of Media Relations, Chuck Dunlap (@SEC_Chuck) for making this fundraising event possible.
Thank you SEC, and congratulations on winning a 6th consecutive BCS National Championship title.
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Thank You SEC

We would like to thank Commissioner Mike Slive and his staff at the Southeastern Conference (SEC) for generously donating the autographed SEC coaches ball to Avery’s Hope Fund.  The football was signed by the 12 coaches of the Southeastern Conference during the 2011 SEC Media Days.

By selling raffle tickets, we were able to raise $5200 dollars that will be used for Glycogen Storage Disease research at the the University of Florida.

We would also like to take a moment to thank Associate Director of Media Relations, Chuck Dunlap (@SEC_Chuck) for making this fundraising event possible.

Thank you SEC, and congratulations on winning a 6th consecutive BCS National Championship title.

    • #Thank You
    • #SEC Football
    • #Fundraiser
  • 4 months ago
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1st Annual T-Shirt Fundraiser a Success!

This should have been updated some time back, but things have been really busy around here.  Thanks to your enormous show of support, we sold over 250 t-shirts during our first ever T-Shirt Fundraiser.  From these sales, we were able to raise more than $3000 for Glycogen Storage Disease research.  Not only did you help by selling and purchasing shirts, but each time one of the t-shirts is worn, you are helping to spread the word about GSD!

    • #Awareness
    • #Fundraiser
    • #TShirt
    • #masonify
  • 4 months ago
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Arabian Nights Fundraiser

In September, approximately 70 guests gathered at the home of Dr. Mary Missak in Memphis, TN, for Arabian Nights, Dinner & Entertainment.  Guests dined on authentic Egyptian cuisine prepared by the host and also enjoyed Middle Eastern influenced belly and fire dancing.  During our presentation about GSD you could have heard a pin drop, even the children were very interested.  The majority of the guests (many of them doctors) had never heard of or knew very little about Glycogen Storage Disease.  We feel that the night was a very big success in that we spread the word about GSD in our local community and raised $5500 for research.

    • #Arabian Nights
    • #Awareness
    • #Fundraiser
    • #Glycogen Storage Disease
  • 5 months ago
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Thank You for Your Support

It is time to catch up a little bit and let everyone know how successful our recent fundraising efforts have been.  First off, we would like to say Thank You to everyone who has participated in any way over the last few months.  Maybe you bought a T-shirt, or a raffle ticket, or voted on our Toyota Sponsafier submission.  Maybe all you did was tell someone about Glycogen Storage Disease.  Whatever you did, Thank You.  This is what it is all about.  Spreading the word about GSD and raising money for research to find a cure.  Again, Thank You.

    • #Thank You
    • #Awareness
    • #Fundraiser
  • 5 months ago
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Voting is once again open.  We were selected out of about 25,000  submissions as a Top 10 Finalist in the Toyota Sponsafier Contest.   AverysHope.org along with CureGSD.org want to spread the word about  Glycogen Storage Disease to the NASCAR Nation, and you can help.  Please  follow the links below to cast your vote for Avery’s Hope sponsored by CureGSD.  If we are selected as the Grand Prize Winner, Toyota will  paint a NASCAR Sprint Cup Race Car in this design scheme and it will be  featured at Phoenix International Speedway in the Toyota Pavilion as  part of the Kobalt Tools 500 on the weekend of November 13, 2011.  Help  us further the cause to find a cure for this disease.  Not only will  this provide exposure and awareness to people who have previously not  heard of Glycogen Storage Disease, but may open the door to research  funding from one of the many sponsors involved with NASCAR.  Please vote  once daily from each computer from October 5th -19th and share with as  many people as possible.
Visit http://www.sponsafier.com/share/13150 and vote.  Remember, you get one vote per day, from October 5th -19th.
FYI - The page is a little slow to load, so please be patient and  share this tip with all that you share with.  Also, you cannot vote from  a phone unless your device is flash enabled (the iPhone/iPad are not).
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Voting is once again open.  We were selected out of about 25,000 submissions as a Top 10 Finalist in the Toyota Sponsafier Contest.  AverysHope.org along with CureGSD.org want to spread the word about Glycogen Storage Disease to the NASCAR Nation, and you can help.  Please follow the links below to cast your vote for Avery’s Hope sponsored by CureGSD.  If we are selected as the Grand Prize Winner, Toyota will paint a NASCAR Sprint Cup Race Car in this design scheme and it will be featured at Phoenix International Speedway in the Toyota Pavilion as part of the Kobalt Tools 500 on the weekend of November 13, 2011.  Help us further the cause to find a cure for this disease.  Not only will this provide exposure and awareness to people who have previously not heard of Glycogen Storage Disease, but may open the door to research funding from one of the many sponsors involved with NASCAR.  Please vote once daily from each computer from October 5th -19th and share with as many people as possible.

Visit http://www.sponsafier.com/share/13150 and vote.  Remember, you get one vote per day, from October 5th -19th.

FYI - The page is a little slow to load, so please be patient and share this tip with all that you share with.  Also, you cannot vote from a phone unless your device is flash enabled (the iPhone/iPad are not).

Source: sponsafier.com

    • #CureGSD
    • #Sponsafier
    • #Awareness
  • 7 months ago
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'\x3ciframe width=\x22500\x22 height=\x22375\x22 src=\x22http://www.youtube.com/embed/ci5X9rza8z8?wmode=transparent\x26autohide=1\x26egm=0\x26hd=1\x26iv_load_policy=3\x26modestbranding=1\x26rel=0\x26showinfo=0\x26showsearch=0\x22 frameborder=\x220\x22 allowfullscreen\x3e\x3c/iframe\x3e'

There is hope for a cure of Glycogen Storage Disease thanks to Dr. David Weinstein and the University of Florida.  Please consider donating today to help fund the research needed to find the cure.

Source: uff.ufl.edu

    • #Awareness
    • #University of Florida
    • #Video
    • #Weinstein
    • #Glycogen Storage Disease
  • 8 months ago
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Avery’s Hope T-Shirt Fundraiser.

Here is the final design for our T-Shirt Fundraiser.  We are still working out all of the details with Oxford Printwear.  What a wonderful group of people to work with!  Get the latest details by following us on Facebook.

Update:

Adult Short Sleeve:
- white, purple, brown, pink
S-XL 20.00
2X +1.00 3X +2.00

Adult Long Sleeve:
- white, purple, brown
S-XL 23.00
2X +1.00 3X +2.00

Youth Short Sleeve:
- white, purple, brown, pink
Youth S-XL 20.00

Youth Long Sleeve:
- white
Youth S-XL 23.00

If you would like to order a TShirt please email us. Please put “TShirt Order” in the Subject. Indicate in the email how many of each size and in what color you would like to order. Don’t forget to specify Short Sleeve or Long Sleeve for each selection.

The shirts are Hanes 6.1 oz/yd 100% preshrunk ComfortSoft cotton Tagless shirts. Take this into consideration when choosing a size.

We will respond to your email to confirm the final price of your order and discuss payment, pick up, delivery, or shipping options. Shipping prices, if necessary, will be based on your location in relation to ours. Minimum shipping price will be 5.00 for the 1st shirt and will increase accordingly depending on the number of shirts and your location.

This is a Pre-Order or Pre-Sell TShirt fundraiser. This means that we will take ALL orders for shirts first, and then submit the order to the print shop, which will in turn print the number of shirts that are ordered. Our plan is to take orders for about three weeks, or less depending on interest. Once we submit the order the print shop has asked for two weeks to process and print the order. So, we are looking at about a five week wait time from now until the shirts are available to be distributed.

This is our first endeavor of this kind so please be patient. Hopefully this will work as smoothly as possible. We really appreciate everyone’s interest and help in our fundraising efforts thus far. For those of you who know Avery, you know how much this means to us. We get excited thinking about everyone who knows more about Glycogen Storage Disease today than they did yesterday. Awareness is truly the key to success in finding a cure.

 

Source: dl.dropbox.com

    • #Awareness
    • #Fundraiser
    • #TShirt
    • #masonify
  • 8 months ago
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2011 Autographed SEC Coaches Ball.
The Southeastern Conference (SEC) has generously donated a football signed by all 12 current SEC coaches to Avery’s Hope.  There are only 36 of these balls that were signed by the coaches during 2011 SEC Media Days, July 20th -22nd in Birmingham, Alabama.
Avery’s Hope will be selling raffle tickets over the next few months, and one lucky winner will be chosen on November 12, 2011, just in time for you to show it off during the Thanksgiving holidays.  The football will be presented in a very nice crystal styrene display case that has a UV coating to protect the signatures.
For a donation of $5.00, you will receive 1 ticket, and for an even better deal, you can get 5 tickets for a donation of $20.00.  All proceeds will go to Glycogen Storage Disease research.
There are 4 college football national championship coaches on this ball.  Don’t miss out on your chance to own a part of college football history.
To donate, please contact Avery’s Hope on Facebook or by email.
Signatures included:
Nick Saban – University of Alabama
Bobby Petrino – University of Arkansas
Gene Chizik – Auburn University
Will Muschamp – University of Florida
Mark Richt – University of Georgia
Joker Phillips – University of Kentucky
Les Miles – Louisiana State University
Houston Nutt – University of Mississippi
Dan Mullen – Mississippi State University
Steve Spurrier – University of South Carolina
Derek Dooley – University of Tennessee
James Franklin – Vanderbilt University
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2011 Autographed SEC Coaches Ball.

The Southeastern Conference (SEC) has generously donated a football signed by all 12 current SEC coaches to Avery’s Hope. There are only 36 of these balls that were signed by the coaches during 2011 SEC Media Days, July 20th -22nd in Birmingham, Alabama.

Avery’s Hope will be selling raffle tickets over the next few months, and one lucky winner will be chosen on November 12, 2011, just in time for you to show it off during the Thanksgiving holidays.  The football will be presented in a very nice crystal styrene display case that has a UV coating to protect the signatures.

For a donation of $5.00, you will receive 1 ticket, and for an even better deal, you can get 5 tickets for a donation of $20.00. All proceeds will go to Glycogen Storage Disease research.

There are 4 college football national championship coaches on this ball. Don’t miss out on your chance to own a part of college football history.

To donate, please contact Avery’s Hope on Facebook or by email.

Signatures included:

Nick Saban – University of Alabama

Bobby Petrino – University of Arkansas

Gene Chizik – Auburn University

Will Muschamp – University of Florida

Mark Richt – University of Georgia

Joker Phillips – University of Kentucky

Les Miles – Louisiana State University

Houston Nutt – University of Mississippi

Dan Mullen – Mississippi State University

Steve Spurrier – University of South Carolina

Derek Dooley – University of Tennessee

James Franklin – Vanderbilt University

Source: dl.dropbox.com

    • #Fundraiser
    • #SEC Football
  • 9 months ago
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Avery's Hope Fund was established to raise public awareness about Glycogen Storage Disease and to support fundraising efforts to find a cure for this disease.
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