Archive for the ‘Blog’ Category

Mom Raising 5 Kids with DS ‘Called to Motherhood’

July 7th, 2015 by Global Down Syndrome Foundation

Leah Spring and her family
Leah Spring and her family

Blumenthal
Tom Blumenthal, Ph.D., upper left, molecular biologist

Espinosa with Kaia and Gertie

Joaquin Espinosa, Ph.D., cancer and molecular biologist

Leah Spring has five children with Down syndrome — and she’s fighting breast cancer. At the Linda Crnic Institute for Down Syndrome, researchers are studying how people with Down syndrome and their resistance to solid tumor cancers can help people like Leah.

Leah Spring, who lives in Eagan, Minnesota, has a big family. Her eight children range in age from 10 to 28 and comprise her “Garden of Eagan,” which is also, not coincidentally, the name of her blog.

Five of those kids also happen to have Down syndrome. Spring gave birth to her first, Angela, in 1996 and adopted her other four between 2010 and 2014 (she’s in the process of adopting a fifth) from Serbia, where only children with special needs qualify for international adoption.

“Down syndrome is normal to us,” Spring told The Associated Press. “If there’s a kid out there with Down syndrome who no one wants because they think they can’t handle Down syndrome, well, we can.”

While Spring, and all of her children, accept Down syndrome as a joyous diversity of ability, she’s had to deal with something much less joyful in recent months, a diagnosis of breast cancer.

The fight hasn’t been easy. She chose to treat her cancer aggressively with a double mastectomy, chemotherapy, surgery, and a five-year course of medication. Through it all, she told the news service, her children have given her the energy she needs to battle this insidious disease.

The Down Syndrome – Cancer Connection

Spring’s children might also be giving her much more.

People with Down syndrome have a significantly lower risk than the typical population of developing solid tumors that cause breast, colon, and other aggressive cancers. Tom Blumenthal, Ph.D., Executive Director of the Crnic Institute, and Joaquin Espinosa, Ph.D., Associate Professor in the Department of Molecular, Cellular, and Developmental Biology at the University of Colorado Boulder and Howard Hughes Medical Institute Early Career Scientist, are researching a number of theories to explain this anomaly. They are looking at how the “overexpression” of chromosome 21 — Down syndrome is caused by having three copies of chromosome 21 instead of two — appears to influence the suppression of solid tumor cancer, as well as how cancers respond to treatment.

For instance, the extra copy of chromosome 21 is known to cause deficiencies in cell division in people with Down syndrome, and scientists have theorized that stem cells required to produce tumors in individuals with Down syndrome may not be able to divide quickly enough to form a cancerous tumor. Another theory postulates that chromosome 21 contains one or more genes that naturally slow down tumor growth. For instance, there is a gene on chromosome 21 known to suppress growth of new blood vessels, and new blood vessels are needed for tumors to grow.

“So far, we do not understand why people with Down syndrome have a significantly decreased frequency of tumors,” Dr. Blumenthal said. “Understanding the elements that can prevent cancer would be a tremendous contribution individuals with Down syndrome could make to the world.”

Join Global Down Syndrome Foundation today to read more about research on Down syndrome and cancer, including how researchers are working to uncover why children with Down syndrome are at a higher risk of leukemia, in the latest issue of Down Syndrome World magazine.
 

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Generous Grant Funds Global’s Hollywood Ball

July 7th, 2015 by Global Down Syndrome Foundation

Alex Taleaga and Anna Stotts
Alex Taleaga and Anna Stotts

SaraStephenson
Paige Bowling, Sara Stephenson, Ashley Poulson and Lauren Farrell

Amy Garcia
Felisha Hess and Amy Garcia

The Salah Foundation helps fund adult education programs including the Be Beautiful Be Yourself Hollywood Ball.

The fourth annual Be Beautiful Be Yourself Hollywood Ball “Gold & Glam” was held on Friday, June 12, 2015 in the elegant Grand Ballroom at the Four Seasons Hotel in downtown Denver. Over 130 adults with Down syndrome and guests attended.

The Denver Post covered the event and noted, “When it comes to fundraising galas, the Global Down Syndrome Foundation seems to have the Midas touch. The smiles and the laughter of the young adults in attendance is enough to light up any room.”

The Salah Foundation grant has allowed Global to work with world-class researchers to create evidence-based educational programs for adults with Down syndrome in the areas of safety, health, nutrition, and communication and speech. The Hollywood Ball provides self-advocates with the opportunity to embrace physical activity and proper socialization skills in a safe and fun environment. The grant enabled Global to provide this high-quality event to a wide audience.

“Every year gets better and better. This is Alex’s favorite event and he counts the days every time,” said Remy Taleaga, Alex’s father. Guests, dressed in their best, enjoyed a glamorous night with dinner and dancing. Many self-advocates were styled and fitted at Global partner Nordstrom. This event is an opportunity to celebrate the beauty and brilliance of people with Down syndrome. Sara Stephenson raved, “My friends and I had a wonderful time, best dance of the year!”

“I didn’t really know what to expect when a friend of mine invited me to this event,” said Streeter McClure. “Now I wouldn’t miss it for the world. I dance all night and I have developed very close friendships. People with Down syndrome are absolutely more alike than different – in some ways they’re way more cool.”

The Salah Foundation is a private foundation that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled.

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Global’s Alzheimer’s Initiative Receives $500,000

July 7th, 2015 by Global Down Syndrome Foundation

Colorado Governor John Hickenlooper and the state legislature allocate $500,000 for the Rocky Mountain Alzheimer’s Disease Center. The state has now invested $750,000 to support the first Alzheimer’s disease research and clinical care center in Colorado and the first in the U.S. with a specific focus on Down syndrome.

Donate to the Alzheimer’s research initiative today

The Global Down Syndrome Foundation’s Alzheimer’s disease initiative received another big boost from the state of Colorado this year when Governor John Hickenlooper included in his budget $500,000 for the Rocky Mountain Alzheimer’s Disease Center.

Colorado Governor John Hickenlooper signs ABLE Act
Governor John W. Hickenlooper signed the Colorado ABLE Act at the State Capitol, with Connor Long, co-sponsor Rep. Jessie Danielson, co-sponsor Sen. Beth Martinez Humenik and Grace Arnold.

Thank Governor Hickenlooper for his support of
Alzheimer’s and Down syndrome research and care.

A key issue for the governor is addressing the fact Colorado is one of the fastest-growing states in terms of Alzheimer’s disease as a percentage of the population. Currently, an estimated 400,000 people in Colorado and adjacent states have Alzheimer’s, at an estimated societal cost of over $18 billion a year, according to a 2015 report from the Alzheimer’s Association.

The scientific world understands most people with Down syndrome have the brain pathology of Alzheimer’s disease and an estimated 50% will develop dementia symptoms before age 50. Answering the question of why half of the people with Down syndrome do not get dementia is a promising path toward treatments or a potential cure for Alzheimer’s, which would benefit people with Down syndrome as well as the typical population with Alzheimer’s.

The Rocky Mountain Alzheimer’s Disease Center is the first comprehensive Alzheimer’s center in the United States with a special focus on Down syndrome. It is housed at the University of Colorado School of Medicine at the Anschutz Medical Campus in Aurora and co-funded by the university’s Neurology Department and the Linda Crnic Institute for Down Syndrome, the first academic home for Down syndrome research in the country. It is the only comprehensive, full-time center in a 600-mile radius of Denver and a much needed resource for families in the region.

Dr. Huntington Potter
Dr. Huntington Potter

Huntington Potter, Ph.D., is the founder and director of the Center and was recruited by the Global Down Syndrome Foundation, the Crnic Institute, and the Department of Neurology at CU.

Potter is a renowned Alzheimer’s disease researcher who discovered the mechanistic relationship between Alzheimer’s and Down syndrome.

Read more about Dr. Huntington Potter’s groundbreaking research

People with Down syndrome by definition are born with three copies of chromosome 21 instead of two. People with Alzheimer’s disease have many cells with three copies of chromosome 21. As the amyloid precursor protein gene (APP) resides on chromosome 21, these trisomy 21 cells produce excess APP and its product, the Alzheimer beta peptide, contributing to the development of Alzheimer’s disease pathology.

“Our first goal is to create — within the next three years — a comprehensive, nationally recognized Alzheimer’s disease patient care center and research institute that will serve the people of Colorado and surrounding states,” Potter said.

In addition to Potter, the CU Department of Neurology recruited Jonathan Woodcock, M.D., to be clinical director of the Rocky Mountain Alzheimer’s Disease Center.

Potter also launched the Center’s first clinical trial looking at Leukine in people with early onset of Alzheimer’s disease after his lab discovered the protein that likely explains why people with rheumatoid arthritis rarely get Alzheimer’s disease. Leukine is already approved by the FDA for use in patients with arthritis, and there are indications that Leukine can be a treatment in the pursuit of a cure for mitigating symptoms of Alzheimer’s.

Read more about Global’s Groundbreaking Initiatives with the national Alzheimer’s Association

Support for the Rocky Mountain Alzheimer’s Disease Center is just one of the Global Down Syndrome Foundation’s Alzheimer’s initiatives. In 2013, the Global Down Syndrome Foundation, the Crnic Institute and the national Alzheimer’s Association established the Down Syndrome-Alzheimer’s Disease Investigator Program. The program has funded $1.2 million in grants to investigators around the world, with another round of grants to be released in 2015.

In May, Global, the Crnic Institute and the national Alzheimer’s Association convened a workshop of leading scientists who are searching for ways to share resources and speed up the search for a cure or effective Alzheimer’s treatments for people with Down syndrome. The group is working to improve data collection around the globe on people with Down syndrome and expand their inclusion in clinical trials, while ensuring that such efforts are done with sensitivity and care.

Read more about the workshop in The Washington Post’s article “Why studying Alzheimer’s in people with Down Syndrome could help everyone.”

Learn more about Global’s Alzheimer’s Initiatives

“Dare to” Football & Cheer Camps Inspire Crowds

June 3rd, 2015 by Global Down Syndrome Foundation

Athletes with Down syndrome will punt, pass, and cheer at Global’s Dare to Play Football and Cheer Camps with Ed McCaffrey and the Denver Broncos Cheerleaders

Dare to Play
Dare to Cheer

Join the Global Down Syndrome Foundation on Game Day and celebrate amazing self-advocates in Global’s Dare to Play Football Camp with Ed McCaffrey and
Dare to Cheer Camp with the Denver Broncos Cheerleaders!

Saturday, June 20, 2015, 10:30am – 2:00pm
Valor Christian High School
3775 Grace Blvd., Highlands Ranch, CO 80126

The Global Down Syndrome Foundation launched the Dare to Play Football Camp and the Dare to Cheer Camp for individuals with Down syndrome in the summer of 2010. The camps have served 500 people with Down syndrome. Each year, the camps include three practices that culminate with a Game Day at Valor Christian High School. During the game and at halftime, the campers get to show off their skills to an audience of more than 400 people.

“Sebastian had an amazing time at the camp and still talks about his pal Marcus. Our entire family enjoyed Game Day immensely! I could go on and on about the awesomeness of the day.” – Jane Hoppens

Football players from Valor Christian High School serve as “Pals” for the Dare to Play Football campers, while members of the Denver Broncos Cheerleaders help teach cheerleading routines, drills and dance moves to the Dare to Cheer campers. On Game Day, they are joined by celebrity coaches such as current and former Denver Broncos Ed McCaffrey, Orlando Franklin, Malik Jackson, Al Wilson, Mark Schlereth, and Brian Dawkins.

Join in the festivities this year! Game Day runs from 10:30am to 2:00pm on Saturday, June 20, ending with a Community Celebration Party!

Registration for Global’s Dare to Cheer Camp has closed, but registration is still open for Global’s Dare to Play Football Camp. Register today!

View photos from past Game Days to preview the excitement.

WA Post Profiles Global’s DS-Alzheimer’s Work

June 2nd, 2015 by Global Down Syndrome Foundation

Gretchen Josephson with her book Bus Girl
Gretchen Josephson with her book Bus Girl

The Global Down Syndrome Foundation (Global), the Linda Crnic Institute for Down Syndrome (Crnic Institute) and the national Alzheimer’s Association co-sponsored a seminal workshop calling attention to the connection between Down syndrome and Alzheimer’s disease. This important workshop was profiled in The Washington Post.

The workshop is one of many collaborations between Global, the Crnic Institute and the national Alzheimer’s Association. In 2013, the three organizations established the “Down Syndrome – Alzheimer’s Disease Investigator Program.” $2.2 million has been committed to this effort so far with initial awards funding promising research to the following scientists:

Eitan Okun, Ph.D., Israel
Ann-Charlotte Granholm, Ph.D., SC
Huaxi Xu, Ph.D., CA
Karen Chang, Ph.D., CA
Donna Wilcock, Ph.D., KY

Crnic Institute Director of Alzheimer's Research Dr. Huntington Potter
Crnic Institute Director of Alzheimer’s Research
Dr. Huntington Potter

Global and the Crnic Institute have made the important connection between Down syndrome and Alzheimer’s disease a priority. In 2012 the Crnic Institute hired Huntington Potter, Ph.D., international expert in Alzheimer’s disease who discovered the mechanistic relationship between Alzheimer’s and Down syndrome. Dr. Potter has been involved with the national Alzheimer’s Association since 1987.

The Crnic Institute and Global work closely with key scientific leadership at the national Alzheimer’s Association including Maria C. Carrillo, Ph.D., Chief Scientific Officer and Dean M. Hartley, Ph.D., Director of Science Initiatives, Medical and Scientific Relations. The Alzheimer’s Association was key in bringing together experts from around the world to the Down Syndrome-Alzheimer’s Disease Workshop including representatives from the National Institute on Aging and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Sponsors of the Down Syndrome-Alzheimer’s Disease Workshop

Alzheimer's Association logo Linda Crnic Institute for Down Syndrome
Global Down Syndrome Foundation logo
lumind logo lejeune logo down-syndrome-achieves

Global’s Survey to Benefit Adults with DS

May 30th, 2015 by Global Down Syndrome Foundation

Adults with Down syndrome

Image by © Markus Moellenberg/Corbis

The Global Down Syndrome Foundation is planning to open their first Adult Down Syndrome Medical Center, Summer of 2016, which will be located in Colorado. ‎This new Center will complement Global’s existing affiliates — the Crnic Institute and the Sie Center for Down Syndrome — in providing a spectrum of research and medical care to the Down syndrome community.

adult

Global has created a nearly 70 member Task Force made up of many renowned medical professionals, activists, and self-advocates from across the country to help them establish this world-class medical center for adults with Down syndrome.

Part of the Task Force’s recommendation is to get input from self-advocates and their families. To this end, Global has engaged Catalyst Healthcare Research to conduct a survey regarding the healthcare needs and lifestyles of adults with Down syndrome. Clearly, it is very important for Global to hear directly from self-advocates and their families about this medical center.

If you would like to participate and take the survey please click your language of choice. The survey can be taken in either English or Spanish.

All survey responses will go directly to Catalyst Healthcare Research and will be encrypted to protect respondent’s anonymity. Names and contact information WILL NOT be shared with any organization involved with the research, unless a respondent personally elects to participate in future Global-related studies (this option is available at the end of the survey).

Glee Stars Shine

May 30th, 2015 by Global Down Syndrome Foundation

The hit TV show is over, but we can’t get enough of Jane Lynch and Lauren Potter, who dish about the show and their relationship in our Spring issue.

Enjoy a sneak peak of our Spring edition of Down Syndrome World™, the award-winning magazine of the Global Down Syndrome Foundation.

Letter from the Editor

DSW Spring cover

Spring is often compared to renewal. With this third edition of Down Syndrome World™, I hope you will feel like part of a renewed commitment to action. That you will be delighted and perhaps even amazed by the work being carried out by and for individuals with Down syndrome.

Become a Global Member
for just $20 a year and enjoy 4 issues of
Down Syndrome World™ Magazine

Think about the progress we are making! Just five years ago the idea of Down syndrome research seemed far-fetched. Today the Linda Crnic Institute has 29 labs and over 100 scientists working on Down syndrome. In this issue we are proud to present a feature on how Down syndrome research could potentially cure cancer.

For our part, we are proud to announce Down Syndrome World™ received the 2015 Gold Aster Award – we are the first Down syndrome publication to ever receive an Aster award! The award is one of the highest recognitions in the healthcare marketing and advertising field. So please keep your letters, support and photos coming.

Michelle Sie Whitten
President and CEO, Global Down Syndrome Foundation
Editor/Publisher, Down Syndrome World

Global 2015 Ambassador Clarissa Joann Capuano

May 30th, 2015 by Global Down Syndrome Foundation

Global is delighted to announce our 2015 Ambassador, Clarissa Joan Capuano. She will rock the runway at our 2015 Be Beautiful Be Yourself Fashion Show on Saturday, October 24.

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Reserve your table or tickets now!

New Venue!
Colorado Convention Center

Saturday, October 24, 2015
For more info please call 303.321.6277
 
Jamie 2015 BBBY Runway

Global Friend Jamie Foxx Releases New Album

May 19th, 2015 by Global Down Syndrome Foundation

Global Down Syndrome Foundation supporter and Quincy Jones Exceptional Advocacy Award recipient Jamie Foxx is headed back to the Billboard charts.

The multi-talented R&B star released “Hollywood: A Story of a Dozen Roses” on May 18.

Foxx’s sister DeOndra Dixon, a Global Ambassador and fellow Quincy Jones Award winner, undoubtedly approves of the new album title. Dixon has seen Hollywood up close and personal. She is a star in her own right, having appeared in Foxx’s music video for “Blame It,” and having danced on stage at the Grammys. In addition, Dixon models each year at the Be Beautiful Be Yourself Fashion Show aside such celebrities as Alec Baldwin, and has graced the front cover of Down Syndrome World magazine.

Jamie Foxx and sister, DeOndra Dixon, for People MagazineWhen Foxx announced the release of “Hollywood” last month on “Jimmy Kimmel Live,” he talked about how much his sister enjoys spending time with R&B star Chris Brown. Brown joins Foxx for the already-released single “You Changed Me” on the album.

“Some of the things that people don’t get to see Chris on the inside like when he comes and dances with my sister who has Down syndrome for hours,” Foxx told Kimmel.

Foxx is a five-time Grammy nominee, and won Best R&B Vocal Performance by a Duo or Group for “Blame It.” He is also an Oscar-winning actor.

“Hollywood” is his first album since 2010’s “Best Night of My Life.”

Watch Jamie Foxx talk to Jimmy Kimmel about DeOndra Dixon and the Global Down Syndrome Foundation

Watch Jamie Foxx’s acceptance speech for the 2012 Quincy Jones Exceptional Advocacy Award:

Watch Jamie Foxx sing to Global co-founder Anna Sie at the 2014 Be Beautiful Be Yourself Fashion Show:

Actor with DS Stars in New Feature Film

May 8th, 2015 by Global Down Syndrome Foundation

“Where Hope Grows” hits theaters May 15. David DeSanctis is the first actor with Down syndrome to land a leading role in a wide-release movie.

David at grocery store - Produce Tom LeGoff 2013-3452-Edit-Edit
 
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“Where Hope Grows,” the first feature film to star an actor with Down syndrome in a leading role, opens in wide release on May 15, and for first-time actor David DeSanctis, it’s the fruition of a long but rewarding experience.

The movie tells the story of a grocery-store clerk who goes by the name Produce, played by DeSanctis. Produce strikes an unlikely friendship with Calvin (Kristoffer Polaha), an alcoholic, burned-out baseball player, and becomes a guiding role for Calvin’s transformation. It’s a movie about relationships and the transformative power of true friendship.

DeSanctis, who is a 22-year-old with Down syndrome from Louisville, Kentucky, found solace in music as he worked extended days on the movie set while making the film.

“I have to learn how to wait on the long hours,” he said. “I worked 12 to 14 hours a day.”

DeSanctis loves music and dancing, and that passion was infectious to the rest of the cast and crew. The music played a big role in bringing DeSanctis, and the rest of the cast, together. For a taste of the camaraderie, be sure to stick around for the end credits after the movie.

Director Chris Dowling said the movie producers created a playlist of songs based on what DeSanctis liked, and they paired the playlist with different scenes in the movie. Then, when days would drag on and filming would run late, the music would break out.

“We might be rushed for time but we’d have a conga line break out in the middle of the grocery store at 11:30 at night,” Dowling said. “David’s a very happy guy, but there are also times where he can get overwhelmed.” The music served as a way for DeSanctis, and the rest of the cast, to refocus.

In preparation for the film’s wide release on May 15, movie screenings have been held across the United States. On May 4, “Where Hope Grows” got a red-carpet premiere in collaboration with Special Olympics in Los Angeles. Global Down Syndrome Foundation sent two self-advocates and their guests to attend and walk the red carpet. In addition, Global supporters were invited to a special screening of “Where Hope Grows” in the Denver area in April that included a Q&A with Dowling.

“Where Hope Grows” was an Official Selection of the 2014 Dallas International Film Festival, and received the Audience Choice Award at the Heartland Film Festival in Indianapolis.

Want to see the movie? Click here to learn more about theaters in your area that will be showing the film.

Learn more about DeSanctis, the movie and what Dowling hopes the impact of the film will be – all in the upcoming issue of Down Syndrome World magazine. Become a member of the Global Down Syndrome Foundation to receive Down Syndrome World.