header image

The SBTS Blog

The Art of Fighting 2014 – Second Annual Event

By technical

THE ART OF FIGHTING 2014 – SECOND ANNUAL EVENT TO HOST INTERNATIONAL ARTISTIC TALENTS, WORLD CHAMPION GUEST COMPETITORS FOR AN IMPORTANT CAUSE

aof

Albuquerque, NM: New Mexico’s premier gaming event returns to Metropolis Comic Art Gallery for a three-day celebration. This year’s show begins Friday, September 26th at 7:00 PM MST with the art gallery opening and sale, featuring a wide variety work inspired by fighting games (Street Fighter, Tekken, Mortal Kombat, many more). Artists include UDON’s Chamba, Genzoman, Edwin Huang, and Omar Dogan; Skullgirls’ Alex Ahad and Sara Talmadge; Bastion’s Jen Zee; comic artists such as Mateus Santolouco, Matt Slay, and Sara Richard; cosplayer Yaya Han; and many more. The event is free to attend.

On Saturday, September 27th, Metropolis, Autumn Games, Lab Zero Games, and NM-ISM present the biggest tournament in New Mexico, featuring eight of today’s most popular competitive fighting games and some very special guest players: from Evil Geniuses, EVO 2014 Champion Justin Wong and Ricky Ortiz, and from Brokentier, Armando “Angelic” Mejia. Registration starts at 10:00 AM MST on Saturday and the tournament will continue into the final rounds on Sunday, September 28th, starting at 12:00 PM MST.

The top three winners of each game will receive unique prizes provided by sponsors Capcom, Bandai Namco, Aksys Games, Eternal Rival, Rose Colored Gaming, and more. Other sponsors include Iron Galaxy, Focus Attack, and Albuquerque’s own Gamers Anonymous. There will be a special “Saturday Night Hype” exhibition series starting at 7:30 PM MST September 27th, including a Southwest Team Battle and an “East vs. West” Albuquerque Grudge Match. The live stream of the event can be seen at twitch.tv/nmism.

THE ART OF FIGHTING is an annual fundraiser event. All proceeds from this event benefit two charities – March of Dimes and Save Babies Through Screening Foundation. These charities advocate for children and families affected by Congenital Heart Defects, or CHDs. CHDs are the most common birth defect, occurring in nearly 1 out of every 100 newborns and claiming more lives than all forms of childhood cancer combined. If not properly detected and treated, they can be fatal within weeks, days, or even hours of birth. Last year, THE ART OF FIGHTING raised over $4000 for these charities, who have since gone on to raise awareness and pass CHD-related legislature in New Mexico. Learn more about CHDs at their websites:

marchofdimes.com

savebabies.org

For more detailed information, please see our web media:

Official site: nmism.com/aof

Facebook: facebook.com/aofabq

Twitter: twitter.com/aofabq

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

SBTS welcomes Ruth Caruthers to its Board of Directors

By Laura Larks

Save Babies Through Screening (SBTS) is pleased to announce that Ruth Caruthers has been elected to its board of directors.

Ruth_Corbin_CHD

Ruth began her advocacy work after her three month old son passed away from heart defects in 2011. Since his passing, she has helped to pass a bill, Corbin’s Bill, that requires pulse oximetry screening in the state of West Virginia.  Ruth has also set up a non-profit, The Corbin Story Fund, in his honor to spread heart defect and pulse ox education and awareness.

Ruth’s biggest passion is to help save babies and with Corbin as her inspiration, nothing in impossible! Her work with newborn screening organizations such as SBTS has only boosted her inspiration, motivation, and passion. She hopes that one day there is no such thing as a missed diagnosis, and every newborn is given the best chance at living a healthy life as possible.

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , , |

Paddle For Kids: most anticipated paddle race event of the year

By Laura Larks

long logo

Event Date: May 24, 2014

Races start at 9a.m.

City: Safety Harbor

Event website: www.paddleforkids.com

Location: Safety Harbor Waterfront Park, 110 Veterans Memorial Ln, Safety Harbor, FL 34695

Paddle For Kids is a waterfront festival featuring paddle race competitions for the elite paddle athlete, the recreational paddler and novice alike! Blake Real Estate presents, what is being referred to as “the most anticipated paddle race event of the year in Pinellas County”, Paddle For Kids, to raise awareness for newborn screening programs. All profits from the races will go to Save Babies Through Screening Foundation.

On December 18th 2012, Rick Blake received a phone call from his 6 day old baby daughter’s pediatrician that would change the family’s lives forever. The pediatrician called to tell him that his daughter needed to be brought in and started on medication immediately. The newborn screening test, a blood test that was taken on the day she was born, just 6 days earlier, had identified an absence in her thyroid function, which could cause physical and mental impairment. Luckily, when identified timely, the issue can be resolved simply by taking a daily medication that leads to living a long, healthy life. Thanks to the newborn screening programs in Florida, this little girl won’t be any different from the other girls her age, aside from being especially sweet, of course! Florida currently screens for 36 disorders at birth, but some families aren’t lucky enough to live in places like Florida, so Blake Real Estate, Rick Blake’s company is raising awareness for The Save Babies Through Screening Foundation and raising funds for them to provide families all over the United States with education as well as offering free newborn screening kits to families who can’t afford them since many areas of the country do not screen for many of newborn disorders.

Paddle For Kids event day will consist of sunrise yoga sessions (on paddle boards), a 3 mile recreational style race, a 7 mile elite race, lots of good food, music, raffles and prizes! SUP racers, kayaks and outrigger canoes are all welcome to race! Learn more about this amazing day of waterside fun at www.paddleforkids.com

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , , |

Michelle Leeker Advocates for Newborn Screening

By Laura Larks

Michelle_Leeker_Krabbe.png

Michelle Leeker is the mother of Trevor Leeker (Krabbe Disease), Kansas Newborn Screening Advisory Council member, and Baby’s First Test 2013 Consumer Task Force Member.  In an effort to raise newborn screening awareness, she recently gave a presentation to her 3rd grade class and a group of high school students.  She shared a slideshow along with the SBTS newborn screening video “One Foot At A Time.”  Her overall goal was to educate younger members of the population on what newborn screening is, why it’s done, and its importance.

Her initial plans were to present specifically on Krabbe, but she decided that sharing about newborn screening’s benefits for all screenable disorders was important.  To her pleasant surprise, her third grade students were very engaged and interested in the presentation and information.  They asked great questions, and continued to express interest the next day!  Her high school class was equally interested and even assisted her in re-wording parts of her presentation to make it even easier to understand.  She sent the revised presentation to the Kansas Newborn Screening Advisory Council for further review and edits, with her end goal being to share it with other high school science teachers in her area so that they can share the information with their students.

Michelle is a wonderful advocate for Krabbe and newborn screening awareness, and we applaud her for taking the time to educate young people on the importance of newborn screening so that they are more aware and informed as they set out into the world and start their own families.  Thank you, Michelle!

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , |

MNAAP Lobby Day

By Laura Larks

Minnesota_NewbornScreening_Advocates

Update from Minnesota!

On the afternoon of March 26th, 2014, over 115 pediatricians, residents and medical students convened at the Minnesota Capital to speak with legislators about newborn screening and other issues important to child health.  This lobby day was organized by MNAAP. Over 140 meetings with legislators where scheduled, all focused on newborn screening.  Commissioner Dr. Edward Ehlinger of the Minnesota Department of Health was also in attendance at the Capital debriefing session, and Representative Nick Zerwas gave a presentation on why he is supporting newborn screening.

Newborn Screening Saves Babies pins  (donated by SBTS) were distributed to all attendees. Parent stories of support for NBS were distributed to those attending Additionally, it was learned that the newborn screening bill is now included in both House and Senate Health omnibus bills to bring to the floor for a vote.

SBTS thanks all of the advocates that took the time to participate in MNAAP Lobby day at the Minnesota Capital to advocate on behalf of Minnesota’s babies!

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged |

Minnesota Newborn Screening Restoration Bill Passes Senate Judiciary Committee Vote

By Laura Larks

We are happy to share that the Minnesota Newborn Screening restoration bill passed the Minnesota State Senate Judiciary Committee last night!

Pictured from left to right: Eric Dick- (Minnesota Medical Association- Manager, State Legislative Affairs), Korissa Olson (Parent Testimony-Board of Directors, Saving Babies Through Screening Foundation), Sen. John Marty (DFL- sponsor of SF 2047)  Stacy Nugent (Parent Testimony), Dr. Susan Berry M.D. (Director for Genetics and Metabolism Dept. of Pediatrics U of M), Phillip Griffin (Lobbyist), Anne Edwards M.D., Martha Overby, J.D.- (State Director of Program Services and Government Affairs), Melissa DeBilzan (Director of Communications- MN Chapter of American Academy of Pediatrics)

Pictured from left to right: Eric Dick- (Minnesota Medical Association- Manager, State Legislative Affairs), Korissa Olson (Parent Testimony-Board of Directors, Save Babies Through Screening Foundation), Sen. John Marty (DFL- sponsor of SF 2047), Stacy Nugent (Parent Testimony), Dr. Susan Berry M.D. (Director for Genetics and Metabolism Dept. of Pediatrics U of M), Phillip Griffin (Lobbyist), Anne Edwards M.D., Martha Overby, J.D.- (State Director of Program Services and Government Affairs), Melissa DeBilzan (Director of Communications- MN Chapter of American Academy of Pediatrics)

Many thanks to Senator John Marty, Stacy Nugent, Dr. Sue Berry and Korissa Olsen for their testimony in front of the committee, and the entire team of dedicated people fighting for Minnesota babies that was present last night!

There is still work to be done to ensure the health of all babies born in Minnesota, so please check back here and on our Facebook page for updates as the bill makes it’s way through the entire process!

Minnesota families, constituents, interested organizations and disease support groups: Please take the time to sign and share our incredibly important petition regarding Minnesota’s newborn screening program.  We are continuing to collect signatures as this bill makes it was through the Minnesota State Legislation process. You can find the petition here.

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , , |

ACTION ALERT: Support MNAAP’s Efforts to Restore the Minnesota NBS Program

By Laura Larks

babies

Please take a few minutes to read this information from Katherine Cairns, Executive Director of the Minnesota Chapter of the American Academy of Pediatrics.

Parents and organizations supporting MN Newborn Screening legislation—

Thank you for your continued support and messages over the past week for our combined efforts to RESTORE the Minnesota newborn screening (NBS) program. This is an update on our joint efforts over the past week.

  • We are scheduled for two hearings next week (House Civil Law on 3-18 am and Senate Judiciary on 3-20 pm) on the newborn screening bill and are preparing our team of testifiers for these hearings.
  • Your help is needed to send letters in support of NBS (HF2526)to select legislators who will be hearing the bill in the next set of committees.   We need a short personal email sent to the following legislators by Monday afternoon, March 17th  …something like “I urge your strong support of Newborn screening HF2526. As a ___(parent, health care provider, other)___I believe we need to restore this program and save the test results”.  OR  “Please support newborn screening HF2526.  The small number of parents who do not want their infant tested have an easy option at birth to not be tested or to have results destroyed”

 

John Lesch (DFL)
Susan Allen (DFL)
Peggy Scott (R)
Mark Anderson (R)
Mary Liz Holberg (R)
Jeff Howe (R)
Brian Johnson (R)
Jim Newberger (R)
Cindy Pugh (R)
Debra Hilstrom (DFL)
Melissa Hortman (DFL)
Tina Liebling (DFL)
Michael Paymar (DFL)
Paul Rosenthal (DFL)
Steve Simon (DFL)
Ryan Winkler (DFL)
Barb Yarusso (DFL)

  •  Media coverage was also very important over the past week.  Statewide newspapers included letters to the editor (below) and the topic was included in  TV reports and radio interviews in support of NBS:

 

Pioneer Press: Babies at Risk (3/9)

St. Cloud Times: New Minnesota Law Threatens Health of Newborns (3/9)

WCCO radio interview   (3/9)

Minneapolis Star Tribune counterpoint by Twila Braise

  • We need more parents who can help with this effort!  Feel free to have other parents who live in Minnesota and are supportive of RESTORING the newborn screening program to contact me at cairns@mnaap.org .  We are facing  well organized opposition that has a strong turnout at hearings and contacts with legislators. Thank you for your work on behalf of Minnesota children and families!

 

Katherine Cairns, Executive Director, Minnesota Chapter of the American Academy of Pediatrics, 1043 Grand Ave. #544, St. Paul, MN 55105, 651-402-2056 (voice) 651-699-7798 (fax) www.mnaap.org

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

SBTS Board Member Kelly Jellin Gives Speech at Stanford for the Association of Auxiliaries for Children

By Kelly

Lucas_Cblc

Lucas and I recently gave a speech at Stanford for the Association of Auxiliaries for Children.  The association raised about $4,800,000 for Lucile Packard Children’s Hospital Stanford.  They donate blankets, quilts, distribute food, read to children, and volunteer many hours of their time.  Luke’s doctor spoke about mitochondrial diseases.  We were asked to join him to add a family’s perspective on what the hospital does.

Unfortunately there isn’t a video of my speech, but the full text can be read below:

When someone asks a parent what they want for their child, the answer is greatness.  They want them to go to an amazing college and then become a CEO, doctor, or lawyer.  An extraordinary life is the goal.  We were like all other parents.

Luke was born at 1 a.m. on a Tuesday morning.  His 6 year old brother and 9 year old sister were so excited to have a new baby and I couldn’t wait to get home so we could all be together.  On Wednesday afternoon we left the hospital even though my husband was worried because Luke had yet to open his eyes.  We were assured that it was normal.  For 2 and a half days, we were a normal family.  One phone call changed all that.

On Thursday at about 5, we got a call from the doctor saying that Lucas had a positive newborn screen.  He said that additional testing was needed.  That night we were sent to our local ER for blood work .   A doctor came in, said that Luke had a genetic disorder, and he would be transferred to Stanford.  Soon nurses arrived and got him ready for transfer, they worked with such efficiency that my husband called them the nursing SWAT team.

We arrived at Stanford at 1 a.m.  We were completely overwhelmed and distraught.  We were whisked out of the NICU and sent to a conference room to get a little sleep.  About 9, we met Dr. Enns.  He was very reassuring and we had full confidence in him.  After we spoke with him, we saw our baby and were taken aback by all the wires and tubes.  I noticed the wonderful handmade quilt he was on and was touched that someone had made it for him.  It was a long hard day.  At 4, we met with Dr. Enns again. This was the first time we heard the term cobalamin C deficiency.  He explained metabolic pathways and what was happening to our newborn.  It was the scariest, saddest, worst day of my life.  I heard very little and understood even less.  Our normal life was shattered!

For 8 days, Luke was in the NICU.  Every morning, we rushed from San Ramon to the hospital to be there for rounds every morning.  The doctors included us and kept us informed.  Finally on his 5th day in the hospital he opened his eyes.  It was worth the wait to see those amazing eyes!    His labs improved markedly and the doctors started to talk about discharge.  Before he could go home, we had to be able to give him his injections.  I was pretty sure he would be in the NICU until he was 40!  But with the help of very patient nurses, we learned to do it and were sent home with our baby for a second time.

Luke was an amazing baby, sweet, funny, happy.  I was nervous but he thrived.  He was a little behind sitting and crawling but with therapy, he caught right up.  We didn’t take a single milestone for granted.  At every metabolic appointment, Luke was treated like a rockstar!  His labs were great because of the amazing care he got and continues to receive.  He is 4 and has a language delay and some vision issues but otherwise he is an average kid.  He wrestles with his best friend, bosses his siblings around, and enjoys life!

I have become active in a support group for MMA families.  I always feel incredibly blessed that Luke gets some of the best care in the country when I hear some of the horror stories other parents tell.  Because of expanded newborn screen and amazing metabolic care, Luke is doing remarkably well.

I want to thank Dr. Enns, the metabolic team, and Lucille Packard Children’s Hospital for giving us the extraordinary gift of a normal life.

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

NBS Blood Spots in California

By Kelly

blogimag

More people are becoming aware of Newborn Screening, but most new parents do not think about what happens to the spots after the screening takes place.  In California, 6 spots of blood are taken from the baby.  Only one or two are used for the screening.  The other spots are given an identifying code and put in storage.  This has been the practice in California since 1982 and little has been thought about it.  Some spots are used for research.  With the recent developments in Minnesota and Texas, people are becoming concerned about the future of the blood spots.

I recently represented SBTS as part of a panel that was formed to make recommendations on the best way to inform the public about what happens to the blood spots.  The panel met at The State Department of Health and was made up of a diverse group, including doctors, epidemiologists, a bio ethicist, a social worker, representatives from a variety of health organizations, people representing various ethnic groups, and parents (two of whom had children that benefitted from NBS, one who fought for NBS to include cystic fibrosis, and one who had recently called to have his children’s cards destroyed).

Currently the California pamphlet on NBS includes information on how to opt out of research or have the blood spots destroyed, but it is buried in the back of information and the language is too complicated for many people to understand.  The panel felt that it was important to educate the public on the benefits of keeping the blood spots on file and why research was providing vital information to the public.  It was felt that parents should have the right to opt out of research at the time the sample is taken.

Education and building trust was the primary focus of the panel.  The Biobank has many policies in place to protect the privacy of their clients and it was felt that the community needed to be informed of the safeguards in place.

The final recommendations of the group were to have an easy method of opting out of research and highlighting the benefits of keeping the spots on file.  Simplified language and better graphics in the information packet was thought to be a must.  The role of technology was touched upon but time ran out before we really could discuss it.

The meeting was incredibly informative and it was felt that considerable progress was made on improving the information the public received about research and blood spot storage.  We will meet again in the upcoming months to further discuss the issues pertaining to blood spot storage and research.

Kelly Jellin, SBTS Board Member

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , , |

Newborn Screening: A Lifetime of Impact from a Simple Heel Stick

By Laura Larks

nbs

Purpose

Newborn screening (NBS) is a state-required test in which blood is collected and analyzed for specific genetic, metabolic, hormonal and other disorders. If a disorder exists, life saving treatments and interventions can be initiated to facilitate the most healthy growth and development possible for the affected infant. Because early treatment is vital, state guidelines mandate that hospitals send blood samples for analysis within 24 hours of collection, and results be reported to hospitals and healthcare providers within 7 days of the infant’s birth.  Even though the nurses in our Mother/ Baby unit were knowledgeable about guidelines regarding NBS and how to prepare specimens, errors in specimen preparation, collection, and submission still existed.  These errors contributed to healthcare costs for parents and pediatricians and delayed the detection of potentially debilitating or fatal diseases.  Earlier in 2011, our specimen rejection rate was 2.5%.

 Proposed Change

To improve our ability to follow evidence-based guidelines regarding NBS, our nurses were required to complete the NC State Laboratory of Public Health online training. Once the training was complete, nurses observed specimen collection under the supervision of a preceptor before they collected specimens independently. We selected a team of nurses to become experts in NBS. These nurses were provided with additional education on common mistakes when performing collections. In addition, several new processes were implemented within the unit.  A new practice was implemented for collecting blood by warming the infant’s heel to facilitate blood flow. A new method for collecting guardian demographic information was implemented to ensure notification in the event of a serious diagnosis. Finally, properly drying the filter paper was emphasized.

Outcomes and Evaluation

After implementing new measures, we conducted a three-month trial of our new processes. Of the 1,297 samples sent to the NC State Laboratory, only three were rejected (0.23%), a 10% improvement from our previous rate.  In addition, no complaints have been filed from local pediatricians or our hospital’s risk management team. After the three month trial results were tabulated. Data confirmed of 6,042 specimens were collected only 59 specimens were returned for recollection. (A rate of return of 0.97% over a one year period)

Implications for Nursing Practice

Our new processes for collection and submission of NBS specimens have shown positive results. We continue to emphasize education and strict adherence to collection methods.  Although our rejection rate is small, we realize that even one missed result may change a life. The results of a properly collected NBS can save an affected newborn from suffering lifelong disability, mental retardation, and sometimes death.

Please feel free to contact us with comments or questions:

Lauren Flogel BSN RNC-MNN lcflogel@yahoo.com

Meagan Widener BSN RNC-MNN mwidener86@gmail.com

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , |