admin • October 27, 2022
504 Plans and HCM

We understand how challenging it can be to manage life with HCM, and we want to lend a hand.
As such, this is the first in a series of short articles to help to get you started concerning
issues such as a 504 plan for your child’s school. Other examples are, what qualifies you for
Social Security Disability Insurance benefits, or what you are entitled to as far as the Family
Medical Leave Act (FMLA). As always, if you have any questions, please contact the office at
(973) 983-7429.

Sample 504 Plan for HCM

As a school official, I will assume that you are aware of 504 plans which come from Section 504
of the Rehabilitation Act of 1973. In summary, a 504 plan includes accommodations that
promote student success academically and behaviorally in the classroom. Hypertrophic
Cardiomyopathy (HCM) meets the criteria for a disability under this law, and therefore, the
student is eligible for accommodations. (1)

HCM is the second most common form of heart muscle disease affecting children and
adolescents and is a leading cause of sudden death in young athletes. The cause of HCM
varied in children. However, most cases of HCM in childhood are caused by changes in cardiac
(heart) protein genes. (2)

The diagnosis of HCM in infants is often made during a check for a heart murmur or heart
failure. Older children are usually referred for symptoms, such as abnormal ECGs, and
echocardiograms. Sometimes it may be that a child is found to have HCM after being screened
after a relative was diagnosed. (3)

● Allow the child to have and fill water bottles as needed. A lack of water can
result in serious cardiac issues.
● Ensure automated external defibrillator(s) are available and operational to quickly
get to a child who is having an event. Depending on the size and layout of your
school, multiple units might be necessary.
● Put plans in place to allow someone to start CPR until the defibrillator is
retrieved. Having this plan in place will allow lifesaving efforts to start with no lag
time for getting the defibrillator.
● Consider implementing ‘Hands-only CPR in Schools Training’ and defibrillator
training too if applicable.

● Allow the child to take part in physical education classes, but modify the activity
level, thereby allowing her/him to be active but not stressed or isolated from their
peers.
● Allow more time to take tests, particularly standardized tests as some of their
medication can cause dizziness, weakness, drowsiness, or fatigue. For
example,
● Allow more time for HCM children to get from one classroom to another. The
increased time will depend on how big your school is and how congested the
halls are between classes.

Having our HCM children well hydrated, granting a few needed allowances, and implementing
the appropriate equipment and training, will help ensure we are keeping our children safe.

With these minor revisions and requests, we can save lives- very young lives. Some schools
may already have invested in this equipment and training. Find out if your child’s school is one
of them. By having these devices on-site, students, faculty, maintenance workers, and visitors
will all have a better chance of surviving a cardiac event.

  1. “Fact Sheet: Disability Discrimination.” US Equal Employment Opportunity Commission,
    15 Jan. 1997, https://childrenww.eeoc.gov/laws/guidance/fact-sheet-disability-
    discrimination
  2. JP;, Moak JP;Kaski. “Hypertrophic Cardiomyopathy in Children.” Heart (British Cardiac
    Society), U.S. National Library of Medicine,
    https://pubmed.ncbi.nlm.nih.gov/22591735/#:~:text=Hypertrophic%20cardiomyopathy%2
    0%28HCM%29%20is%20the%20second%20commonest%20form,errors%20of%20met
    abolism%2C%20neuromuscular%20disorders%20and%20malformation%20syndromes
  3. Moak, Jeffrey P, and Juan Pablo Kaski. “Hypertrophic Cardiomyopathy in Children.”
    Heart, BMJ Publishing Group Ltd and British Cardiovascular Society, 15 July 2012,
    https://heart.bmj.com/content/98/14/1044

HCMA Blog

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June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
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