May 2014
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May, 2014 - Some Things In This Issue:
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SIRCh Registry
REGISTERING in SIRCh will help us better understand and improve the lives of the people and families all over the world living with SADS.
You can join SIRCh at sads.patientcrossroads.org.
REGISTER in SIRCh by June 1 and have your name entered in a drawing to WIN one of 3 prizes: one $250 VISA card; two $125 VISA cards!!!!
(Complete registration required in order to qualify for the prize)
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Neighborhood Program
The SADS Foundation has now rolled out a new fundraising program! The Neighborhood program is a new way to volunteer and help raise funds for the SADS Foundation by simply asking your neighbors and friends. We provide you all the materials needed, all you need to do is talk to your friends and neighbors and encourage them to donate and/or get involved with a great cause. If you are looking for a way to get involved, contact Grace at [email protected] for more information.
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Six Years of GINA, What an Accomplishment!
Today marks the six year anniversary of the Genetic Information Non-Discrimination Act (GINA). The Genetic Information Non-Discrimination Act of 2008 (GINA) is a federal law that protects individuals-like our SADS families--from genetic discrimination in health insurance and employment. The SADS Foundation applauds all of you-and the many other groups-who worked so hard for so many years to pass GINA.
Please learn more about GINA here.
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SADS Receives Recognition at the
Annual HRS Scientific Sessions
The SADS Foundation had the prestigious honor of having our scientific session concept accepted for inclusion in their 2014 annual meeting. On May 8th, we participated in our session entitled Collaborative Management of Complex Genetic Issues in Pediatric Patients - The SADS Experience. We'd like to thank the session chair, Dr. Michael Ackerman as well as Dr. Peter Schwartz, Dr. Charlie Antzelevitch, Dr. Arthur Wilde, and Dr. Elizabeth Stephenson for participating and presenting difficult cases that had been submitted to the SADS Foundation for advice and discussion amongst our scientific advisors, from physicians across the country. It's a unique model that we have had tremendous success with, and to be recognized and given a session by HRS was a huge leap for us. We look forward to the continued growth of this important program and for more opportunities to educate the healthcare community about diagnosing, treating and managing SADS conditions.
SADS Attends Heart Rhythm Society's (HRS)
Annual Scientific Sessions
As always, HRS was jam packed with exciting meetings, opportunities and education! The SADS team traveled to San Francisco from May 5th - 10th to participate in one of our largest annual conferences. We met with and learned from the most distinguished physicians and researchers around the world when it comes to cardiac channelopathies. Beyond attending scientific sessions to learn cutting edge information, we also participated in the PACES strategic planning meeting, PACES annual dinner, hosted our scientific advisors in a discussion about what's next for SADS, hosted the National Society for Genetic Counselors Cardiac Special Interest Group luncheon, the PACES Allied Health Professional happy hour, and took part in international meetings such as China Night. There was great attendance and participation at the first ever scientific session dedicated to the SADS Foundation's experience with difficult cases, presented by some of our esteemed scientific advisors. We also hosted many successful corporate discussions and distributed SADS literature and materials at our joint US/International SADS Foundation booth. The conference was a huge success and we are busy with all of the exciting follow up efforts - Way to go team!
Heart Rhythm Society (HRS) Community Event 
We would like to thank everyone who attended the HRS Community Event on Wednesday May 7 at the Crocker Galleria Mall in San Francisco, California. We would like to specially thank Kathi and Scott Blum for their dedication and help in staffing the SADS booth. Kathi and Scott were able to raise awareness about SADS conditions by sharing their personal story with the San Francisco community as well as by passing out Sudden Cardiac Death risk assessment forms and wristbands with the SADS warning signs attached.
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SADS Presents the 7th Annual Courts K. Cleveland Young Investigator Awards!
To encourage the next generation of researchers in SADS conditions, we announced our winners for the 7th Annual Courts K. Cleveland SADS Foundation Young Investigator Awards in Cardiac Channelopathies during the Pediatric and Congenital Electrophysiology Society (PACES) annual dinner meeting in San Francisco, CA this month.
"Supporting new research in the ever-growing area of cardiac channelopathies is the hope for the future. Young, brilliant minds will create the next life-saving scientific breakthroughs that will help save young lives." -Charles Berul, M.D., Board Member; SADS Foundation Board of Directors; President of PACES
Congratulations to Nicole Bocaeck, BA (Mentor: Michael Ackerman, MD, PhD) from the Mayo Clinic for her award in Basic Science on the topic Characterization of SEMA3A-Encoded Semaphorin as a Naturally Occurring Kv4.3 Protein Inhibitor and its contribution to Brugada Syndrome, and to Jamie Kapplinger, BA (Mentor: Michael Ackerman, MD, PhD) also from the Mayo Clinic on his award in Translational/Clinical Science on the topic Enhanced Classification of Brugada Syndrome- and Long-QT syndrome-Associated Genetic Variants in the SCN5A-Encoded Nav1.5 Cardiac Sodium Channel.
There were 14 phenomenal submissions and we'd like to thank the review committee chaired by Dr. Shubhayan Sanatani for their time and efforts. For Press Release Click Here.
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Stay Safe at Camp This Summer 
Summer camps are a great way for children to get together to learn new skills, make friends and have fun. When sending your child to summer camp, it is important to be sure that the camp is aware of his or her condition and is properly prepared to respond in the event of an emergency. This includes making sure staff is CPR trained, understands and avoids SADS triggers (startle, stress, etc), is aware of your child's medications and frequency medication should be taken, has a care plan in place for your child, and an AED is available and easily accessible.
You can also find a list of special camps for children with congenital heart conditions, implanted devices, etc at http://www.sads.org/living-with-sads/Emotional-Support/For-Kids/heart-camps-for-kids. Patients with SADS conditions should not be limited to attending camps focused on heart conditions or devices. However, we feel that sometimes a specialty camp creates a unique experience and can help to address support issues that regular camps generally do not.
We're always looking to expand our list of camps, so if you have a great recommendation (heart-related or not) contact Matt at [email protected] or call 800-STOP-SAD to share.
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Raising Awareness in Ohio
Rebecca Dinin of Middleburg, OH recently presented at her Third Grade Science Fair on Long QT Syndrome. Rebecca has LQTS Type 2, as well as her two siblings and her dad. Rebecca was born at 32 weeks in heart failure, which led to the family's diagnosis. She got a pacemaker when she was six days old, a second one at nearly four years old and an ICD last month at the Mayo Clinic. Rebecca has cerebral palsy in addition to the long QT due to heart issues before and at birth. She's had 14 surgeries, has learning issues, but keeps pushing on and is a happy child for the most part.She wants to grow up to be a cheerleading coach, have babies and be a mom.  In her free time, Rebecca likes to watch cheerleading videos, play Wii games, play with her American Girl dolls, swim and play 7-A-Side Soccer for special needs kids (Paralympic Soccer). Also, she LOVES dogs, especially her next door neighbors "grandpuppy" Lucky and her family's dog, Taylor, who they've had for four years. While she did not win the fair (according to the Judges), she is a winner in our eyes (as well as her parents) for teaching people about LQTS, giving out information on SADS, and learning more about her own condition. Rebecca made a poster, brought in her AED for display, set out SADS bracelets and brochures, and even wore her Flat Bob t-shirt she got at last year's International Conference. Great work Rebecca!
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Heart Safe Schools Accreditation Website Launched
SADS is pleased to announce the launch of The Heart Safe School Accreditation (HSSA) website. It contains the seven-accreditation elements, HSSA Toolkit, HSSA PowerPoint presentation, and a list of all certified schools in the United States.
The toolkit is a comprehensive 53-page manual. The first ten pages include all the required information, such as the Program Overview (mission, seven elements, steps to complete the program), Intent to Participate form, and the Application form. The rest of the toolkit contains resources to assist in completion of the required seven elements.
The HSSA PowerPoint has eight slides that overview the HSSA program including discussion notes. This is perfect to use if you have a meeting set up with a school board or Parent Teacher Organization.
The Heart Safe School Accreditation was designed in a manner so that it is achievable, yet provides the necessary measure to improve safety at our schools. We hope to have many schools and districts to thank and congratulate in the coming year!
Congratulations Pickerington School District on Becoming Heart Safe!
Pickerington School District in Pickerington, Ohio has become the first school district to receive the Heart Safe School Accreditation (HSSA) in all its school buildings. Congratulations to Pickerington School District and all their schools on this monumental achievement!
For the full news story visit http://www.sads.org/News-submission/NBC-Coverage-of-Heart-Safe-Schools
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SADS Ambassador Jennifer Paul Presents:
Take Heart San Diego
Take Heart San Diego: Long QT Families and Kids Support Group began last summer and just had its second meeting in February in honor of "Heart" month. We started the group because we hadn't met anyone in San Diego with LQTS and wanted to create a way for parents, kids or anyone affected
by LQTS in the San Diego area to meet, share stories and support each other and educate the San Diego Community about Long QT and the SADS Foundation.
Our son Justin was diagnosed with LQTS2 about six hours after he was born in August of 2011. He is the first in our family with LQTS. Our family has been tested and it was a spontaneous mutation that started in him. We're very thankful to the nurses and doctors that saved Justin's life and caught what they thought was a heart murmur, but expressed itself clearly as LQTS on the EKG and genetic test. We're happy to say Justin is a very active, adorable and happy two and a half year old today.
So far we've either met or been in touch with 13 families in the area. Our plan is to invite guest speakers, to hold the meeting at different public locations around the city, and to participate in "heart" volunteer opportunities. We would have given anything to meet and speak with people living with LQTS in person after Justin was born. Now we are here to help other families navigate this journey.
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Educating Physicians About SADS - It's Important
 Have you ever had a doctor prescribe a medication on the "Drugs to Avoid List" even after knowing your condition?
Have you ever gone to a cardiologist who looks at your EKG and says there is nothing wrong, only for you to later have an episode?
Then you know how important it is to have the SADS Foundation working to make sure this no longer happens. Since 1992, the SADS Foundation has reached out to educate your physicians so that they better understand and treat SADS conditions.
Click here to give today!
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EVENTS
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HCM Meeting
May 30, 2014
Morristown, NJ
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Bike the Drive
May 25, 2014
Chicago, IL
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CPR and AED Awareness Week
June 1-7, 2014
National
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Heart to Heart Conference at the Royal College of Nursing
October 18, 2014
Cavendish Square, London
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Sincerely,
The SADS Foundation
Alice, Christine, Matt, Connie, Jan, Jenny, Sarah, Grace, David and Brandon
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