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 [email protected] 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.

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."

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!

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!