SADS 20th Anniversary Logo









  August 2013

Get Your Care Plans for SADS Safe Schools Month Today!

3 Helpful Tips on Keeping Your Kids Safe with Care Plans 


Along with your back-to-school shopping and last minute summer vacations, the SADS Foundation would like to provide you with some tips on keeping children safe every day and in case of an emergency.

 

  1. Develop an individualized School Health Care Plan for your child by taking our care plan to your child's physician, customizing your care plan, and working with your school health professionals using your knowledge of your child's condition.
  2. To ensure that your child's Individualized School Health Care Plan is in place and working, verify that a school administration or health professional is responsible for receiving the plan, the care plan is housed in an easily accessible area, and the school trains staff regarding the existence and implementation of individual care plans.
  3. Check to see that the school has an AED, a plan for the use of the AED, and whether all appropriate staff is trained to use an AED.

 

Order your SADS Safe School Kit Today Here!

Click Here to Register Now!

Mrs. Georgia makes SADS her platform

 

This August 28 will be seven years since the passing of Kerry Ann Schulman and the tragic loss of a wonderful daughter, sister, and friend to so many. Her best friend, Sandra Cauley, remembers the day she heard the news and the helplessness of not knowing what to say or do. It was about a year later when Sandra told the VP of Development and Marketing at the SADS Foundation, "One day, I would love to be able to have a voice so that I can spread the word about SADS to help save the lives of others like Kerry Ann so that their families will not feel this same grief and loss."

In the spring of 2013, Sandra won the title of Mrs. Georgia United States 2013 and then went on to become one of the youngest finalists this past July in the Mrs. United States national pageant. Having earned the opportunity to represent her home state as Mrs. Georgia for the current year, Sandra chose SADS to be her platform and the SADS Foundation to be her charity. With this new position, Sandra will have many occasions throughout Georgia to raise awareness and educate individuals about SADS symptoms and the importance of genetic testing.

Sandra now knows what to say and do, "I have found my voice and no longer feel helpless," says Sandra, "Please join with me in remembering Kerry Ann Schulman and supporting the SADS Foundation by clicking here and making a donation. You can be a part of helping me to reach my goal of raising $15,000 for the SADS Foundation during my reign as Mrs. Georgia."

We at the SADS Foundation join Sandra in remembering Kerry Ann Schulman this August 28 and congratulate Sandra on becoming Mrs. Georgia United States 2013 with much appreciation for her partnering with us to support families and save lives.

Finally, check out the following list if you would like to contact Sandra for more information about her work with SADS, the Mrs. United States Pageant system, scheduling appearances, or following Sandra on Facebook or twitter for updates.

MrsGeorgiaUS2013@gmail.com
Facebook.com/MrsGeorgiaUnitedStates
Twitter/Instagram @TheMrsGeorgiaUS 

Hearts for Research: Choosing Cures over Cuts 

 

The National Institutes of Health (NIH) is our country's chief medical research center and has helped millions across the country by preventing heart diseases and other conditions that can be treated from becoming terminal. After Congress decreased funding for the NIH this past March, many research labs that rely on the NIH were forced to postpone or abandon valuable projects that could lead to potential treatments helping patients to overcome debilitating diseases.

 

You can urge our nation's decision-makers to make medical research a priority investment by showing congress the face of medical research! Click Here to be an advocate for cures!

International

Easy Ways to Give

 

As fall giving campaigns are kicked off in both federal and private workplaces, consider giving to the SADS Foundation through one of the following employee giving procedures:

 

Combined Federal Campaign (CFC) - If you are a federal employee, sign up to give a monthly donation to the SADS Foundation through payroll deduction. A small monthly donation adds up to significant support for our programs. Contact Jan at jan@sads.org of 801-531-0937 for our CFC charity number.

 

United Way - Although the SADS Foundation is not a United Way agency, employees who have a United Way Giving Campaign in their workplace may still designate to the SADS Foundation. United Way does honor any non-profit organization to which you would like to give.

colorful youth

Safety of Sports for Athletes with ICDs- Scientific Study

 

In the May, 2013 Circulation article Safety of Sports for Athletes with Implantable Cardioverter-Defibrillators: Results of a Prospective, Multinational Registry, the authors discuss the risk of sports participation for ICD patients. Authors, including several SADS Scientific Advisors, studied a registry of 89 athletes, ages 10-60, participating in organized or high risk sports, the most popular of which being running, basketball and soccer. ICD shock data and clinical outcomes were studied by qualified EPs. Over a median 31 month follow up, there were no occurrences of either death or resuscitated arrest or arrhythmia - or shock related injury - during sports. There were 49 shocks in 37 participants (10% of the study population) during competition/practice, 39 shocks in 29 participants (8%) during other physical activity, and 33 shocks in 24 participants (6%) at rest, indicating that ultimately, the ICD terminated all episodes.

 

This study is the first to show that many athletes with ICDs can engage in sports without physical injury or failure to terminate the arrhythmia. This data suggests that a blanket recommendation against competitive sports for all patients with ICDs is not warranted. There are risks and benefits of sports participation. However, neither do these data suggest that all sports are safe for all patients. How best to evaluate individual risk is an important avenue of future research and support the basis for more informed physician and patient decision making on sports participation for athletes with ICDs.

 

Awareness Raised in South Africa

 

This month, Chantal Mackenzie presented her story and information on SADS Conditions to over 1000 medical professionals at the Resuscitation Council Symposium in Johannesburg, South Africa. We are so proud and grateful for the awareness she spread. Here is what she had to say about the event:

 

"I must admit, it was quite daunting to address so very many people at the Symposium. It was funny - after I spoke Dr Anderson quipped that I should be awarded an Honorary doctorate for the medical knowledge I have picked up on this journey. I was flattered but also see the sad side of that. I wish I did not need to know so much complicated medical jargon."

  

When the boys started passing out and medics were called, many people took notice. Prior to this, their attendance at sporting events almost guaranteed a win for the team, so their absences were very obvious. Through the medics and the various doctors who were constantly attending to my boys in 2010, word got out and Professor Walter Kloeck heard about our plight. He contacted me to ask if he could use our ECGs for his dissertation. I said yes, of course, and we started communicating about SADS and the need for AEDs in schools.

 

I think the fact that there are four cases in my family alone, with at least two different conditions that we know of, and the fact that I am an admitted Advocate and have no fear of addressing crowds on something so very close to my heart (sorry, pun inevitable), made me an appealing candidate as a speaker.

 

I lost an aunt to SIDS and an uncle to SADS, and personally know two parents and a friend who have lost loved ones to SADS, and there is just not enough awareness of this. When we were first diagnosed I was angry, shocked and very sad, especially as my children had to give up so much. They had to give up their dreams, and suddenly we spent every waking moment fearing sudden death. Over time we have embraced a new normality. Whilst I still often cry, and I rarely get a proper night's sleep, I am so grateful we were diagnosed and given the opportunity to change our lifestyles (so we could have a life) and get medication. We were given a chance, but if tragedy strikes and the people around us do not understand the gravity of the situation, we will die. Too many others have succumbed to this because of this. That is the passion that drives me."

Congratulations to SADS Youth Ambassador, Brittan Sutphin!
 
 
This year Brittan Sutphin, a SADS Youth Ambassador, received the Student Researcher of the Year award from the Society of Pediatric Research for her work at the Mayo Clinic with Dr. Ackerman. She's working hard to raise awareness about sudden cardiac arrest and the benefits of AEDs. She is a spokesperson for SCA Awareness and an Ambassador of Advocates for Injured Athletes. Great job Brittan! Keep up the great work!

 

 

 

Climb to Conquer SADS in 2013!
 
The Sudden Arrhythmia Death Syndromes (SADS) Foundation is hosting its 7th Annual Climb to Conquer SADS fundraiser on September 15, 2013. This mountain climbing memorial is a sponsored dedication to families who have had loved ones pass away from SADS conditions and other heart rhythm abnormalities. 

This year, we lost a beloved teen due to complications related to LQTS. Dalton Motlow will be remembered in the hearts of everyone he came in contact with. Many families have come together to honor his memory by creating a flag for this Climb to Conquer SADS event. Although a flag cannot summarize a lifetime of cherished memories, the New Orleans Skyline reaching up toward the clouds, and as the climbers make their journey up Mt. St. Helens, brings us closer to reaching Dalton once again. 

To donate to Dalton's memorial flag, click here. If you would like to make a donation in memory of him, you may also click here

 

 

This year, climbers will be summiting Mt. St. Helens, situated in the southwest corner of Washington State. Individuals, families, and corporations can virtually hike with the climbers by raising $1,000 to purchase and decorate a flag for a climber to take to the top. Once there, the climber will take a photo with the flag. The photo and the flag will be returned to those who purchased it. Contact the SADS Foundation for information about the flags.  

 

The funds you raise will contribute to the SADS Foundation's tireless efforts to support research, awareness and advocacy for a SADS conditions. Join us on Mt. St. Helens as we support families and save lives.

 

Click here to check out our website for more info!

Welcome to the SADS Family, David!

 

Originally from Ohio, David Hulet came to Utah to attend school at Brigham Young University. He graduated in 2008 with a Bachelor's degree in English, (emphasis on Creative Writing) and minors in Anthropology and Psychology. His degrees have given David fascinating insight into people, how they work, and how to write about them. His compassionate and caring nature has repeatedly driven him to jobs in the non-profit sector. He is excited for the work he will be doing at SADS, especially as it relates to his diverse skill set in organizing, managing, and technical writing. David loves a challenge more than anything, and strives to make sure that nothing gets in the way of achieving his dreams.


When he's not working, David uses his free time to play Ultimate Frisbee: whether local pickup, City League, or as part of Salt Lake's traveling club team, Inversion.

 

To email our Office Manager, David, click here!

Welcome to the SADS Family, Grace!

 

I came to Utah from California and graduated from the University of Utah with a Bachelor of Science in Communication. Over the years I have volunteered for several different charitable organizations, and it has been a long time goal of mine to work for an organization that makes a difference in people's lives. For this and many other reasons I am very honored and excited to have been given the opportunity to work with the SADS Foundation and community as a part of the Development Team. 

 

To email Grace, the Development Assistant, click here!



September 14
Roller Derby
Sparta, NJ
Upcoming Events
    
September 15
Climb to Conquer SADS 2013
Mt. St. Helens, WA

 

  



 September 21
Oktoberfest
Colorado Springs, CO 

September 21
Living With Inherited
Heart Disease- Conference
Menlo Park, CA

September 29
Heartoberfest
Saratoga Springs, NY


November 1-3
7th International Conference
Columbus, OH



Sincerely, 

The SADS Foundation

Alice, Anne, Carol, Sylvie, Christine, Jan, Rachel, Sarah, Grace, David and Brandon

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