Michael Mosier Defeat DIPG Foundation Statement on RACE for Children Act

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CONGRESS TAKES ACTION ON #1 CAUSE OF DISEASE DEATH FOR KIDS: CHILDHOOD CANCER

The RACE for Children Act gives children fighting cancer access to promising treatments.

Bethesda, MD – Michael Mosier Defeat DIPG Foundation applauds the introduction by Senator Michael Bennet (D-CO), Senator Marco Rubio (R-FL), Representative Michael McCaul (R-TX), Representative G.K. Butterfield (D-NC-01), Representative Chris Van Hollen (D-MD-08), and Representative Sean Duffy (R-WI-07) of the RACE for Children Act (Research to Accelerate Cures and Equity for Children Act). This bipartisan, bicameral bill would enable children with cancer to have access to clinical trials of the most promising cancer drugs with molecular targets.

Pediatric cancer is the number one disease killer of children. However, kids with cancer cannot get access to the most promising and novel unapproved drugs. Cancer drug development is more exciting than ever, as every day there are new understandings of molecular targets. Unfortunately, when companies abandon development of drugs for adult cancers – which is the case the vast majority of the time – the opportunity to develop these drugs for children disappears. This bill would authorize the U.S. Food & Drug Administration to require pediatric studies when a molecular target of an adult cancer drug is relevant to a children’s cancer.

Unlike almost all Congressional bills, the RACE for Children Act is not a new program: it is merely an update of the Pediatric Research Equity Act (PREA) that enables the law to catch up with the science. PREA requires companies developing drugs for adults to also develop them for children. However, contrary to Congressional intent, PREA has never applied to cancer because children’s cancers occur in different organs than do adult cancers. Now that cancer drug development is by molecular target, the RACE for Children Act would apply PREA by molecular target as well.

“We commend the legislators who introduced this bill for their leadership in taking a stand for children fighting cancer. My six-year-old son, Michael, battled a devastating pediatric brain cancer called DIPG with few clinical trial options and essentially no hope for survival,” said Jenny Mosier, Co-Founder and Executive Director of Michael Mosier Defeat DIPG Foundation, “We must expand options for our children. I am heartened to see that the RACE for Children Act could open possibilities for kids to have earlier access to the most promising and innovative drugs.”

“Researchers in Colorado and throughout the country are making dramatic advances in the fight to treat and cure cancer. But there has been a lag in the amount of research devoted to pediatric cancers,” Bennet said. “This bill will help use what has been learned from adult cancer research to help treat kids with cancer. It’s a simple update to our laws that has the potential to help save thousands of kids.”

“Childhood cancer touches too many families in Florida, including my own, but modern technology and medical advancements have me more optimistic than ever that cancer as we know it can be defeated in our lifetime. It is important to focus on helping more children overcome cancer in the 21st century, and this legislation I am sponsoring will help,” said Rubio.

“I’m proud to introduce the RACE for Children Act to encourage more research into more treatment options so children fighting cancer across our nation will have better chance to beat this disease. I’m especially proud to introduce this bill on behalf of the many advocates, moms, dads and children who have tirelessly fought to get more attention, funding and resources for the fight against pediatric cancer. I look forward to continuing my work with them and other stakeholders to make this important legislation the law of the land.”

“We’ve made great strides in combating childhood cancer, but unfortunately the laws governing childhood cancer research are misaligned with the current science of cancer drug development,” said McCaul. “The RACE for Children Act will modernize the law to provide for pediatric studies on the most promising and innovative treatments. I will continue to work with my colleagues and the advocacy community to find ways to give hope to the nearly 15,000 children and adolescents diagnosed with cancer each year.”

“Pediatric cancer remains the number one cause of disease-related death for children in the United States, surpassing deaths from asthma, diabetes, congenital anomalies, cystic fibrosis, and pediatric AIDS combined. While the cause of childhood cancer remains unknown, advancement in modern technology has allowed us to increase survival rates.” said Butterfield.  “I am proud to join my colleagues in the introduction of the RACE for Children Act, which invests in advanced pediatric cancer treatment that will make a tremendous difference in the lives of families in North Carolina and across the country.”

“Childhood cancer remains the leading cause of death in American children, and the lack of available treatments is a tragedy,” Van Hollen said. “I’m proud to join with my colleagues in introducing The RACE for Children Act, which will help advance research into lifesaving cures. We must continue to work together to combat this deadly disease and to promote the development of new treatments for the nearly 16,000 children who are diagnosed with cancer every year in America.”

“We can defeat childhood cancer, and the RACE for Children Act will help us get there,” said Duffy. “Our children deserve twenty-first century laws that reflect the latest research and development in our ongoing battle against cancer.”

The bill is supported by the Coalition for Pediatric Medical Research, Children’s Hospital Colorado, Dana-Farber Cancer Institute, Duke University Medical Center, Georgia Regents Health System, Massachusetts General Hospital for Children, MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center, Nemours Children’s Health System, NYU Langone Medical Center, Rady Children’s Hospital – San Diego, St. Jude Children’s Research Hospital, Texas Children’s Hospital, the Children’s Hospital of Philadelphia, and more than 100 pediatric cancer advocacy organizations.

Michael Mosier Defeat DIPG Foundation is a 501(c)(3) organization dedicated to promoting awareness and finding treatments and a cure for the deadliest pediatric brain cancer, diffuse intrinsic pontine glioma (DIPG), through funding of medical research. Learn more at defeatdipg.org.

 

Executive Director Jenny Mosier Speaks at FDA Meeting on DIPG

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On June 29, 2016, Michael Mosier Defeat DIPG Foundation Executive Director Jenny Mosier gave a statement at a U.S. Food and Drug Administration public hearing on DIPG, before the the Pediatric Subcommittee of the Oncologic Drugs Advisory Committee.  She was grateful to attend as a National Brain Tumor Society volunteer and on behalf of Michael Mosier Defeat DIPG Foundation.

“I respectfully urge the FDA to adopt the view that pre-treatment biopsy is an ethical, and potentially essential, surgical intervention that could benefit children facing this disease that is presently considered terminal on diagnosis,” Mrs. Mosier stated, “We were choosing a treatment that would be our six-year-old son’s only chance of surviving.  We would have wanted any additional information we coul gather to guide us towards the most promising therapy . . . the existing options are simply insufficient and unacceptable.”

The Pediatric Subcommittee of the Oncologic Drugs Advisory Committee concluded that given the prospect of benefit for the population of DIPG patients, coupled with the evidence that biopsies can be conducted on tumors in the brainstem without significant adverse incidence, there is a favorable risk/benefit calculation that led the group to conclude they were supportive of the use of biopsies when done within a clinical trial or systematic investigation. This conclusion followed strong presentations from outside guest speakers Dr. Mark Kieran, Dr. Jeffrey Leonard, and Dr. Nalin Gupta pertaining to DIPG treatment opportunities and details on surgical experiences with DIPG biopsies. Five parents, including Mrs. Mosier, spoke at the hearing to share their children’s treatment experiences and provide the parent perspective on the question of pre-treatment biopsies.

The subcommittee considered DIPG biopsy and treatment options in the context of the devastation that this disease inflicts: that 90% of kids will not survive 2 years and that overall survival is near 0%.  There was a general consensus that we have to look at new, creative, and novel approaches. The FDA’s conclusions were positive steps towards advancement in the search for treatments and a cure to DIPG.  Michael Mosier Defeat DIPG Foundation expresses its appreciation to the FDA, and in particular the Pediatric Subcommittee, for its time and careful attention to these important issues.

The full text of Jenny Mosier’s statement can be found HERE.

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Inaugural Superhero Sprint & 6K Honors Our Childhood Cancer Heroes and Raises Over $127,000

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The inaugural Defeat DIPG Superhero Sprint & 6K, held on May 29, 2016, was a wonderful success, raising over $127,000!  Over 800 people registered for the 6K, 1K or Tot Sprint, and another 50 virtual runners sent their support from afar.  We had an incredible crew of volunteers, event staff, and spectators who also joined in the fun.  We give special thanks to our Presenting Sponsor, Headfirst Summer Camps, for their dedication to the cause and efforts to make the event fun and special for all.

The morning was filled with friendship, hope, and inspiration in the fight for a cure to DIPG.  We honored many of our childhood cancer heroes through our Salute Our Superheroes Wall.  We were so fortunate to bring together so many families who have been in this fight and continue to raise their voices and take action to fight childhood cancer.

We congratulate our top finishers and every person who participated.  The awards overall and each age category for the 6K can be found HERE.  The complete results for the 6K are HERE.

This event would not have been possible without our awesome volunteers and our incredibly supportive event sponsors.  Our Community Partner, Westfield Montgomery, provided invaluable assistance.  We thank Tommy McFly from the Tommy McFly Show on 94.7 Fresh FM for serving as our emcee for the event!

Please take time to check out this complete list and support these businesses who have partnered with us in the fight against DIPG brain tumors.  We can’t wait for 2017!  Stay tuned for details!

WITH DEEP APPRECIATION TO OUR SPONSORS AND SUPPORTERS

PRESENTING SPONSOR
Headfirst Summer Camps

PLATINUM SPONSORS
The Annette M. and Theodore N. Lerner Family Foundation
By Bryan Edward
NextGen LED
PepsiCo

GOLD SPONSORS
Debevoise & Plimpton LLP
Kaiser Permanente
Lilian Cohen Design

COMMUNITY PARTNER
Westfield Montgomery

MEDIA PARTNER
94.7 Fresh FM

PACKET PICKUP SPONSOR
Sports Zone Elite

EVENT DJ
DJ Jamaal

EVENT PHOTOGRAPHER
Joanna Little Photography

SILVER SPONSORS
Children’s National Health System
Fishel Hass Kim Albrecht LLP
Good Stuff Eatery
The Harbor School
Jessica Neumann Photography
Kadin Family Chriopractic & Wellness Center
Kidball
Kidville-Fallsgrove
Main Stage Home Staging & Organizing
Prosperity Home Mortgage LLC – Lynlea Cronin
Team 91 Lacrosse

BRONZE SPONSORS
Brit-Am Soccer Academy
Congressional Insurance Associates
Creig Northrop Team of Long & Foster Real Estate
Jim Coleman Toyota
Temple Sinai
Whole Foods

 

After Losing Their Son to Childhood Cancer, DC Lawyers Fight to Improve the Chances for Others, by Roksana Slavinsky, Bisnow DC

Roksana Slavinksy of Bisnow DC tells the story of the Mosier family and their quest to find a cure.  Slavinsky highlights the Dress Down to Defeat DIPG event in June, where law firms in DC, New York and Baltimore will designate “go casual” days where employees will donate to the Michael Mosier Defeat DIPG Foundation in order to dress casual for work.  Check out her article HERE.

Maryland Lt. Governor Rutherford Welcomes Michael Mosier Defeat DIPG Foundation to State House in Annapolis for First-Ever DIPG Awareness Day

 

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For the first time in Maryland’s history, Governor Larry Hogan established May 17, 2016, as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day, to help raise public awareness of this deadly childhood cancer.  Michael Mosier Defeat DIPG Foundation was pleased to visit the Maryland State House in Annapolis on May 17, to receive the official Proclamation.  Lieutenant Governor Boyd Rutherford presented the Proclamation and spoke to the gathering of DIPG families, leading doctors and researchers from NIH and Children’s National Medical Center, and other supporters.

Executive Director Jenny Mosier delivered a speech to mark the occasion and recognize a number of Maryland children who passed away due to DIPG, including her son, Michael Mosier, Christopher Sliker, Crystal Krug, Brogan Ruppert, Sebastian Gagliardi, Emma Hensel, Sarah Rosenbaum, and Sydney Schlobohm.

DIPG is the leading cause of childhood death due to brain tumors and typically strikes school-age children. DIPG Awareness Day falls during brain tumor awareness month, and specifically on the one-year anniversary of the passing of Michael Mosier, for whom Michael Mosier Defeat DIPG Foundation is named.

“We thank Governor Hogan and Lt. Governor Rutherford for their strong leadership. Through this Proclamation, they are giving a voice to children who are unable to advocate for themselves. Recognizing this devastating disease is an important milestone in the quest to promote awareness of one of the leading causes of disease death for our children,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation, “This awareness day honors our son, Michael, along with all of the young children who lost their lives too soon after brave battles with DIPG.”
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Michael Mosier Defeat DIPG Foundation Expanding Across the Map to Find a Cure for DIPG Childhood Brain Tumors

Michael Mosier Defeat DIPG Foundation, a nonprofit whose mission is finding a cure for DIPG (diffuse intrinsic pontine glioma), announced today that it is expanding from its headquarters in Maryland across the United States. The Foundation will now operate in Texas as Connor Man Defeat DIPG Foundation and in Washington as Avery Huffman Defeat DIPG Foundation.

 

In June 2015, Jenny and Mark Mosier created Michael Mosier Defeat DIPG Foundation to fund research for DIPG, the deadliest form of pediatric cancer, and to promote awareness of the disease. Before Michael Mosier passed away in May 2015 at the age of 6, he began raising money to fund DIPG research to help other kids who received the same diagnosis that he did. Over the past 12 months, between Michael’s fundraising and the Foundation’s work, the Mosiers have raised nearly $500,000 for research. By expanding across the United States, Michael Mosier Defeat DIPG Foundation expects to continue its rapid growth and increase its capacity to fund essential childhood cancer research.

 

Through their work for the Foundation, Jenny and Mark connected with Amanda and Brandon Huffman in Auburn, Washington, and Alexis and Peter Olympia in Houston, Texas. These families were unfortunately following the same path as the Mosiers, as each family had a child battling DIPG. Sadly, Connor Olympia passed away from DIPG in October 2015, and Avery Huffman passed away from DIPG in February 2016.

 

In the face of the devastating loss of all of their children, the Mosiers, Huffmans, and Olympias committed themselves to their common passion to find a cure for DIPG. With Michael Mosier Defeat DIPG Foundation established as an active presence in the DIPG community, the families decided that they could best further their common goal by working together. Michael Mosier Defeat DIPG Foundation will now operate in Washington under the trade name Avery Huffman Defeat DIPG Foundation and will do business in Texas as Connor Man Defeat DIPG Foundation. The families expect to grow stronger through their geographic diversity, and they will work to expand the already powerful base of support in each of their communities.

 

“The shared nightmare of watching your child deteriorate day-by-day as they suffer from this disease creates a strong bond between DIPG families,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “We feel a deep urgency to make a difference and defeat this disease that stole so much from our child and family. It is unacceptable that children diagnosed with DIPG have no treatment options. We are privileged to be working with the Huffmans and Olympias who inspire us and are equally driven to find a cure. They will be a source of strength as we expand our efforts.”

 

DIPG is the leading cause of disease death for children under 10 years old, with a median survival from diagnosis of 9 months and a near 0% survival overall. DIPG typically strikes children between ages four and eleven. Because of its location in the brainstem where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.

 

For decades, treatment for DIPG has remained the same and has been ineffective. The entire amount spent annually on DIPG research – approximately $3 – 5 million – is less than 0.0005% of the total funding for cancer research. In just the past few years, due to better medical technology and increased access to tumor tissue, researchers have made real advances in their understanding of this disease. There is finally hope for progress in finding a cure.

 

Michael Mosier Defeat DIPG Foundation, Avery Huffman Defeat DIPG Foundation, and Connor Man Defeat DIPG Foundation are dedicated to promoting awareness and finding treatments and a cure for DIPG through funding of medical research.

For a printable copy of this release, with contact information, please click HERE.

What Motherhood Means to Me, One Year After Losing My Son, The Huffington Post, by Jenny Mosier

Executive Director Jenny Mosier shares her reflections on motherhood, one year after her son, Michael, passed away from a DIPG brain tumor.  Read her Huffington Post story HERE.

Inaugural Strike Out DIPG Bowling Tournament Raises $30,000!

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The Strike Out DIPG Online Silent Auction & Bowling Tournament was a tremendous success, raising roughly $30,000!!  We could not be more grateful to all who participated. With 250 attendees, 44 bowling teams, and demand for more, we can’t wait to put on the tournament again next year! We were so thrilled to have special guest — baseball legend Roger Clemens — who was incredibly generous to spend time with event attendees and lend his support to our efforts.  Thank you to Randy Hendricks for helping us to make the special appearance happen!
 
We cannot emphasize enough that this event would not have happened if it wasn’t for the amazing hosts who came up with the idea and then grew it to something none of us would have predicted: Paul & Caroline Cornett, Michelle Carreras & Jordan Horoschak, Amanda & Rob Burleigh, and Brooke & Chip Halpern.  Thank you for your steadfast commitment to ending this disease. When we began planning for this event, we were so fortunate to have Alexis & Peter Olympia of The Connor Man Foundation join our team. They made incredible contributions, and we look forward to working with them on our shared mission.
 
What made the event even more special was having other DIPG families in attendance. Thank you to Stacie Stahl for making the long trip to bring Destiny who was our MVP of the tournament – fighting DIPG and melting hearts with her sweetness and smile! Thank you to the Torres family for being there to honor Gabriella, and thank you to family and friends of Avery Huffman, Brooke Healey, and Jack Culverhouse for attending.
We are grateful for the great team at Palace Bowling Lanes who worked with us to create the perfect atmosphere for an afternoon of family fun.  And thank you to Archana Singh for taking photographs at the event!
Finally, we express our heartfelt appreciation to our auction donors and sponsors, who made the auction and overall event such a success :

American Girl

The Austin Symphony

Baby Bull Boxing

Amanda & Rob Burleigh

Cake & Eat It Too

Caesar’s Entertainment

The Caldwell Family

Johnny Carrabba

Michelle Carreras

Chick-Fil-A

Children’s Museum of Houston

Chuy’s

Roger Clemens

Contemporary Dental

The Cornett Family

CRU Food & Wine Bar

Elite Island Resorts

Caroline & Charles Enriquez

Firehouse Subs

Lydia & Adolfo Garza

The Gauthier Family

Penny & Tom Haber

Scott Haber & Susan Wright

Ross & Anndreya Harris

Hasta La Pasta

Hamilton & Traci Hill

Jordan Horoschak

Hotel Galvez & Spa/The Tremont

House, Wyndham Grand Hotels

Houston Astros

Houston Rockets

iPic Theaters

Kendra Scott Jewelry

The Lanier Law Firm

Main Street Theater

Danielle & Mike Marshall

Metcalf Fine Art Portraits

Molina’s Cantina

Jack & Heather Nelson

Otterbox

Pedal Party

Premier Designs Jewelry

Vanessa Rabe, Rodan & Fields

ReConnect Chiropractic & Holistic

Center

Santikos Theatres

Kenny Singer

Spec’s Wine, Spirits, and Finer Foods

Steve Lee Photography

Studio Movie Grill

Texas Children’s Hospital

Texas Christian University

Tiff’s Treats

Total Wine & More

Sara Toussaint

The University of Texas

The University of Texas Golf Club

Walt Disney World Co.

Westford Renovations

Wynn Las Vegas

“This Week is Different,” by Major League Lacrosse’s Paul Rabil

Major League Lacrosse Star Paul Rabil takes a stand against DIPG in this video that raises awareness and gives a special shout out to DIPG warrior Camron Cozzi from Seattle, Washington.  We thank Paul for joining us in this fight!

Check Out the Amazing Strike Out DIPG Online Auction!!

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The Michael Mosier Defeat DIPG Foundation is pleased to launch our STRIKE OUT DIPG ONLINE AUCTION, available from the comfort of your home and accessible from anywhere!  This auction is taking place in connection with the Strike Out DIPG Bowling Tournament in Houston, Texas, on March 12, 2016, and it will run online until 4:00 pm, on March 12.  We’ve received some unbelievable donations from our supremely generous auction donors, so there is something for everyone to bid on — no matter where you live!  Here are just a few of the great items open for bid:

  • 4 Park Hopper passes for Walt Disney World!
  • Signed memorabilia from Roger Clemens, Shaka Smart, and Dwight Howard!
  • Beautiful pieces of jewelry from Kendra Scott, Lele Sadoughi, and Premier Designs!
  • Luxury accommodations in Antigua,  St. Lucia,  Grenadines, Panama, Galveston and Las Vegas!
  • A Texas ranching adventure!
  • Golf foursome at the University of Texas Golf Course!
  • Rockets Suite Tickets and Astros Field Box Tickets!
  • An American Girl Doll!
  • And many many more!

Check it out today!  And, if you are in Houston and want to join us for the Strike Out DIPG Bowling Tournament on March 12, you can purchase your tickets HERE.