Police Make Video to Help Teen with Down Syndrome Battling Cancer Meet Taylor Swift

By Kathy Ehrich Dowd from People:

Taylor Swift, we hope you're reading.

A 13-year-old superfan who has Down syndrome and is battling cancer really wants to meet her idol, and a police department that knows a thing or two about the power of the Internet has made a video that they hope will make her dream come true.

Delaware's Dover Police Department made international headlines in January when Officer Jeff Davis was recorded jovially lip-synching to "Shake It Off" while driving his cruiser.

The viral smash earned the approval of the pop star herself, who re-Tweeted the department's video. Her record company even sent the department tickets to the upcoming Taylor Swift concerts in Philadelphia on June 12 and 13.

Fan letters poured into the police department from all around the world, but one standout note hit close to home: The mother of Victoria Marsh of Middletown, Delaware, wrote to the officers and told them about her daughter, a dedicated Swiftie who has Down syndrome and was diagnosed with osteosarcoma, a form of bone cancer, in December.

Arizona family travels to Michigan to help another family whose daughter is battling cancer

by Kim Russell from WXYZ ABC 7:
WARREN, Mich. (WXYZ) - A family from Arizona stopped in at a Warren home today to do yard work. The reason?  They know a little girl who lives there is fighting cancer.
Lexi Spencer, 11, has Down Syndrome and is halfway through an expected 30 month treatment for cancer.
The Murset Family wanted to make it easier for Christine and Jim Spencer to focus on their daughter, without having to worry about chores outside the house. Gregg Murset, his wife, and six children cleaned windows, weeded, trimmed trees, and did other chores today.
Gregg says he is trying to practice what he preaches. He runs a website, myjobchart.com .  It helps kids keep track of their chores and good deed through an app.
Kids can then earn an allowance, buy items, or donate money to charities.
"This is an outgrowth of what myjobchart is," said Murset. "It is teaching kids responsibility, work ethic, and giving back."
The Spencer family isn't the only family benefiting. The Mursets are traveling more than 6,000 miles this summer helping families.
"I don't think anybody has done this before," said Syndney Murset, 13. "It is fun to help people and see what their reactions are. "
For Lexi's parents seeing the get done, is a weight off their shoulders.
"I can't tell you how heartwarming it is for people to come from so far and do things we have wanted to do. I mean, our windows, they haven't been washed in 2 years," said Christine Spencer. 

A Christmas gift one Denton family won't soon forget

by Todd Unger from UFAA 8:
DENTON — It is a Christmas gift that one family still can't believe.
"It's a big change from last year," said Stephanie Perry.
On Sunday afternoon, the Perry family got a first look at the handiwork of about 30 volunteers who spent the weekend redoing part of their house through a new charity called Sunshine Spaces.
The Perrys' youngest daughter, Brielle, has both Down syndrome and cancer. Through $6,000 of private donations — and even more donated materials and man hours from Denton businesses — Sunshine Spaces was able to make over the bedrooms of Brielle and her older sister, Reese.
A family room was also outfitted with new paint, a popcorn machine and more.
"This has completely restored our faith in everybody," said Ryan Perry, Brielle's dad.
Erica Jones, who helped start Sunshine Spaces with her husband, said the decision to help the Perrys was an easy one.
"They are such a good family," she told News 8.
Brielle's cancer is in remission, according to her mom. But there could be more treatment necessary in February.
News 8 first profiled the family's courageous battle earlier this year.
The couple says their family is overjoyed at the gift during a time of year when it matters most.
E-mail tunger@wfaa.com

Boy with Down syndrome kicks his cancer and brings smiles

from MSN Now:
This has to be the happy snapshot of the day. It's a photo of a young boy with Down syndrome and cancer celebrating the end of chemotherapy. Less than a day after it was uploaded to Reddit by user Kjr567, it had been viewed almost 837,000 times. "This picture has single-handedly made me feel the happiest I've felt for a long time. Thank you for posting it; and I wish that little man every possible success in his future," wrote one Reddit user. Kjr567 claims to be a family friend of the happy boy and said he's "always smiling." And now, thanks to his picture, we are too.  [Source]

Courageous cancer patient, 32, who lived for her baby with Down syndrome passes away on Mother’s Day

By Sasha Goldstein  from New York Daily News:

Courageous cancer patient, 32, who lived for her baby with Down syndrome passes away on Mother’s Day 

Rogers of Ladue, Mo., was thought to be infertile when she became pregnant with son Tristan. The family celebrated the boy’s first birthday in March.

Jorie Rogers just wanted to live long enough to celebrate her son’s first birthday.

She got her wish, but the mother who wasn’t supposed to be a mother, the mother who wanted only the best for her miracle baby with Down syndrome, lost her battle with cancer on Sunday, her second and final Mother’s Day.

"It's very special because not only are we celebrating my son's first year and everything that he had to go through to get here, but it's the one birthday that I'll get with him," Rogers said in March when she held a carnival-themed party for her son, Tristan. "And we get to celebrate the one year that we had together."

She had stopped treatment in March after doctors told the Ladue, Mo., mother that her paraganglioma, a rare form of cancer that caused dozens of tumors in her body, had advanced to a point of no return.

Extra chromosome 21 removed from Down syndrome cell line

By Leila Gray from UW Health Sciences/UW Medicine:

University of Washington scientists have succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down syndrome, a condition in which the body’s cells contain three copies of chromosome 21 rather than the usual pair.A triplicate of any chromosome is a serious genetic abnormality called a trisomy. Trisomies account for almost one-quarter of pregnancy loss from spontaneous miscarriages, according to the research team. Besides Down syndrome (trisomy 21), some other human trisomies are extra Y or X chromosomes, and Edwards syndrome (trisomy 18) and Patau syndrome (trisomy 13), both of which have extremely high newborn fatality rates.
In their report appearing in the Nov. 2 edition of Cell Stem Cell, a team led by Dr. Li B. Li of the UW Department of Medicine described how they corrected trisomy 21 in human cell lines they grew in the lab.  The senior scientists on the project were gene therapy researchers Dr. David W. Russell, professor of medicine and biochemistry, and Dr. Thalia Papayannopoulou, professor of medicine.
The targeted removal of a human trisomy, they noted, could have both clinical and research applications.
In live births, Down syndrome is the most frequent trisomy. The condition has characteristic eye, facial and hand features, and can cause many medical problems, including heart defects, impaired intellect, premature aging and dementia, and certain forms of leukemia, a type of blood cancer.
“We are certainly not proposing that the method we describe would lead to a treatment for Down syndrome,” Russell said.  “What we are looking at is the possibility that medical scientists could create cell therapies for some of the blood-forming disorders that accompany Down syndrome.”
For example, he said, someday Down syndrome leukemia patients might have stem cells derived their own cells, and have the trisomy corrected in these lab-cultured cells.  They could then receive a transplant of their own stem cells – minus the extra chromosome – or healthy blood cells created from their fixed stem cells and that therefore don’t promote leukemia, as part of their cancer care.
He added that the ability to generate stem cells with and without trisomy 21 from the same person could lead to better understanding of how problems tied to Down syndrome originate.  The cell lines would be genetically identical, except for the extra chromosome. Researcher could contrast, for example how the two cell lines formed brain nerve cells, to learn the effects of trisomy 21 on neuron development, which might offer insights into the lifelong cognitive impairments and adulthood mental decline of Down syndrome. Similar comparative approaches could seek the underpinnings of untimely aging or defective heart tissue in this genetic condition.
The formation of trisomies is also a problem in regenerative medicine research using stem cells. Russell and his team observed that their approach could also be used to revert the unwanted trisomies that often arise in creating stem cell cultures.
Figuring out the exact techniques for removing the extra chromosome was tricky, Russell said, but his colleague Li worked hard to solve several challenges during his first attempts at deriving the engineered cell lines.
“Dr. Li’s achievement was a tour de force,” Russell said.
The researchers used an adeno-associated virus as a vehicle to deliver a foreign gene called TKNEO into a particular spot on chromosome 21, precisely within a gene called APP, which sits on the long arm of the chromosome.  The TKNEO transgene was chosen because of its predicted response to positive and negative selection in specific laboratory growth mediums.  When grown in conditions that selected against TKNEO, the most common reason for cells to survive was the spontaneous loss of the chromosome 21 harboring the transferred gene. Other survival tactics were point mutations, which are single, tiny alterations in DNA base pairs; gene silencing, which meant TKNEO was “turned off” by the cell; or deletion of the TKNEO.
Russell explained a key advantage of this technique for getting rid of the entire extra chromosome: Once it was gone, nothing was left behind.
“Gene therapy researchers have to be careful that their approaches do not cause gene toxicity,” he said. This means, for example, that removal of a chromosome must not break or rearrange the remaining genetic code. This method shouldn’t do that.”
Other researchers on this study were Kai-Hsin Chang, Pei-Rong Wang and Roli K. Hirata. The project was supported by grants from Horizon Discovery and from the National Institutes of Health (DK55759, HL53750,GM086497, DK077864, and HL46557.)  The researchers declared no financial conflicts of interest.

Woman with Down Syndrome and breast cancer meets Bieber

from WFMY News 2:
28-year-old Jessica Hickman, who has both Down syndrome and breast cancer, had her wish come true when she got to meet Justin Bieber before his concert in Minneapolis

Down syndrome and cancer doesn't dim her spirit

from WCF Courier by Karen Bushanam:
Even before Kay Recker gave birth to her daughter, she had a sense about the child and who she would become.

Recker believed the baby would be a girl who would be a source of much delight. She also told her doctor the baby would face health problems.

Dawn Michelle Recker was born on Sept. 11, 1974. Her first name translates a few different ways: to grow light, to give promise, the break of the day.

Dawn, now 37, has lived up to her name in every way, according to her parents, Bob and Kay Recker of Waterloo. She continues to shine despite a nearly three-year battle with terminal lung cancer.

"She is the light of my life," Kay Recker said.

Recker's other instinct proved true.

Shortly after Dawn's birth, doctors diagnosed Dawn with Down syndrome. The genetic disorder causes moderate-to-severe developmental delays, learning disabilities and cognitive impairments.

The Reckers remember the marching orders issued at the hospital: Just take her home and love her. The advice also came with a litany of limitations.

"I was a very passive person when I married but I think God had other plans for me," Kay Recker said. "I changed that day."

Kay Recker planned to love her daughter. She also became a vocal and passionate advocate for Dawn and a tireless caregiver.

"My line was always 'time was of the essence,'" Kay Recker added.

The family has spent almost four decades making sure Dawn had every opportunity to maximize her full potential, said Bob Recker. who retired several years ago as an engineer for John Deere.

Dawn earned a high school diploma at West High School, where she made the honor roll and managed the spirit team. Almost two decades later, special education teacher Tami Sommerfeldt can still recall the polite girl with a friendly disposition who made an effort in the classroom. Dawn was one of Sommerfeldt's first students.

"She was always with a smile on her face and a 'thank you,'" Sommerfeldt said.

Dawn went on to attend classes at the University of Northern Iowa and held several jobs.

Family photos also capture a full social life: Dawn clowning around with her brother. Dawn dancing the night away at prom. Dawn cheering at a football game. Dawn on the ski slopes of Colorado.

"Our whole thing was to experience and grow every little bit," Kay Recker said.

Over the last month, maximizing life has meant making the most of the Christmas season. From brightly strung lights to beautifully adorned evergreens to hot chili and cheesecake, the holiday has a lot to offer, according to Dawn.

"It's my favorite holiday," Dawn said.

Earlier this week, she eagerly anticipated the arrival of her older brother and daily Skype partner, Chris, 39, in town to celebrate Christmas. Dawn had their itinerary down pat: Culver's, hot chocolate, Christmas Eve Mass, and SKIP-BO.

"I'm so excited," she said.

Christmas is a big deal at the Recker household and decorations play pretty significant role in preparing for the holiday, thanks in large part to Kay Recker. Dawn does her part, too.

This year, Kay Recker donated and put up trees, ornaments, wreaths, garland, snow people and other festive bits at the Covenant Cancer Treatment Center on Ridgeway Avenue in Waterloo.

Dawn has been making trips to the cancer treatment center for two years. Kay Recker wanted to give other patients something to take their mind off their troubles.

"I just thought it would be something to brighten their holidays up," Kay Recker said.

A miniature pink tree touts the cause of breast cancer awareness. A snowman and sleigh display is meant to conjure up feelings of Christmas long ago.

"I thought that was kind of fun and whimsical," Kay Recker said.

She has apparently succeeded on all fronts, according to Cindy Staley, a receptionist at the cancer center.
But the best medicine may come from an interaction with Dawn: She regularly exudes charm, compassion and honesty.

"You don't meet Dawn without falling in love with her," Staley said. "She is such an upbeat --- precious is what I'd call her."

Dawn has a way of keeping things simple. A true "clothes horse," according to her family, she readily admits an interest in fashion and accessories. Kay Recker takes some responsibility for the hobby, having taught her daughter to take care in her appearance.

"You can say to her, 'Oh, honey, you look darling today.' 'Oh, I know it,'" is a typical Dawn response, Staley said. " ... She's not inhibited at all. So many of the honest things that a lot of people hold back, they just totally come out of her."

Even as cancer has spread throughout her slight body, complaints from Dawn are unheard of and tears are reserved for moments of great pain, Kay Recker said. A former hospice volunteer, Kay Recker is surprised they don't happen more frequently.

"It's not too bad now," Dawn said earlier this week. "It comes and goes."

Earlier this week, the Reckers enrolled Dawn in a hospice program. Kay Recker leans on her faith for solace.

"Prayers have been my biggest thing," Kay Recker said.

Although she is prone to worry, Dawn is quick to offer comfort. If she thinks her mom is in need of assurance, she is quick to offer a hug or a hand pat.

"And Dawn puts her arm on her shoulder and says, 'I'll be fine, mom. Chin up ... ,'" Staley said.

Dawn's body has grown weaker but the strength of her spirit hasn't waned, said Rev. Jerry Kopacek at St. Edward Catholic Church in Waterloo. The Recker family attends St. Ed's.

"She is one of the strongest, most resilient people it's ever been my privilege to know," Kopacek said. "She has a very deep faith and a very deep love for God and a very strong love for her family."

Since the cancer diagnosis, the Recker family has endured more than one health scare. More than once, Dawn has rallied.

The gift of time allowed Dawn to travel to Colorado and walk down the aisle as a bridesmaid in her brother's wedding. The Reckers have visited Disney World and New York City.

And they have gathered to celebrate another Christmas together.

"We've been blessed," Chris said.

Jumping for Jacob Contributes $30,000 Childhood Cancer Research Grant

from NeighborNewspapers.com:

Rally Foundation, a national non-profit organization committed to research to fight childhood cancer, announced it will be distributing $30,000 to fund research at Northwestern University-Chicago Campus on the biology and targeted therapy of childhood Acute Lymphoblastic Leukemia (ALL) in patients with Down Syndrome.


Funding for this grant was made possible through Jumping for Jacob, a family fundraising event honoring 11-year-old Jacob Moore who has Down syndrome and is currently battling leukemia.

Diagnosed in November 2009, Moore is a Rally Kid, a child who has fought or is fighting cancer, and is currently in the middle of his three and a half year treatment plan. Jacob lives in Alpharetta with his Mom and Dad and brother, Jared.


“Through the grant provided by Rally Foundation in conjunction with fundraising efforts from Jumping for Jacob, we are taking one step closer to understanding the link between Down Syndrome and ALL,“ said Dr. John Crispino, the Rally-funded researcher at Northwestern University. “This research will lead to continued breakthroughs in successfully treating the disease in patients with Down syndrome and allow us to learn more about the varying effects of current treatments.”

Rally’s grant at Northwestern is a part of the collective $700,000 in childhood cancer research grants made nationally this year. In its first five years, Rally has given more than $2.2 million in grants across the country in its efforts to find better treatments with fewer long-term side effects. These grants support more than 50 projects nationwide that include young investigators awards, research nurses and fellowships. For every dollar Rally receives, 93 cents goes to support its mission, according to independently audited financials.

“Communities and families, such as Jacob’s, across the country have joined Rally in supporting the need for more research,” said Dean Crowe, Founder and CEO of Rally. “It is our hope that, one day soon, new and more effective research will eliminate all childhood cancer.”

Research links cancer cells & cognitive deficits in Down syndrome

From EurekAlert.org:

Dana-Farber Cancer Institute scientists have discovered new details of how cancer cells escape from tumor suppression mechanisms that normally prevent these damaged cells from multiplying. They also demonstrated a potential link between this cell proliferation control mechanism and the cognitive deficits caused by Down syndrome.

James A. DeCaprio, MD, of Dana-Farber said the results may provide new targets both for blocking the progress of cancer and perhaps for facilitating the growth of neurons in the developing brains of infants with Down syndrome.

DYRK1A's ability to turn off cell growth genes may also be involved in the lower-than-normal development of brain neurons in Down syndrome, say the scientists, who are investigating possible new avenues to treating the disorder.

While they tend to have cognitive losses, people with Down syndrome have a markedly lower risk of most types of cancer. DYRK1A is made by a gene on chromosome 21, which is present in three copies instead of the normal two in people with Down syndrome, causing the enzyme to be overproduced. DeCaprio said this abnormal activity could explain both outcomes: DYRKIA-triggered DREAM formation could help suppress cancers by driving them into senescence, and also reduce the generation of brain cells during development.