For the final week, we want you to choose the activity. Go on a bike ride, do some jumping jacks, or just turn on some music and dance, etc. And then reach out and connect with a friend.
Make sure you fill out the last survey as well.
If you’d like to join our Facebook group to chat with other people who are also participating, form teams, and post your challenges and successes, click here.
Be on the lookout for a SADS water bottle (click here to fill out your shipping information – please note we can only ship within the US). Have your address submitted by March 8th 2024. Please let us know if you have any questions or concerns. Thank you and have a great week!
My name is Lauren. I am a 40 yo woman, diagnosed with Long QT 1 at age 30. I am an avid exerciser and looking forward to connecting with others with SADS conditions during this journey.
I’m Julie. My son’s ages 10 and 14 and I have CPVT. I’ve been asymptomatic but youngest has had 5 cardiac arrest ore diagnosis. We are in Texas, U.S.
My name is Jaclyn and I am 37 years old! I was diagnosed with ARVC fall 2023. I lost my infant son in February 2023 who was born with HLHS, he contracted an infection and through genetic testing they found he had the pkp2 gene mutation. I then met with a cardiologist at Vanderbilt and received my diagnosis. I have a ICD with pacing leads. I don’t know anyone else with my condition. Looking forward to meeting others and getting involved.
My name is Rochelle, I was recently diagnosed with ARVC and had ICD implantation surgery. I have the PKP2 gene mutation and just found out my 6 years old daughter tested positive for the same gene mutation.
I’m grateful to be here, grateful for my amazing doctors and heart specialists and team, and grateful for a new month and new life really!
My name is Kathryn Holden. I have Long Qt. My first ICD was implanted o1/2000. I have been a runner since I was 27. I have participated in eight Marathons since 2008. I currently walk/jog and participate in exercise classes. I am looking forward to connecting with other that have SADS conditions.
My name is Clare. I was diagnosed with Long QT seven years ago, after Kayleigh, my 19 yr old daughter, died in her sleep. I look forward to interacting with other parents.
I’m Rachelle and I have CPVT. I’m 27 and I’m really excited to use this to get ready for rare disease week!
My 15 year old son was diagnosed with CPVT this past Fall. A 3 sport athlete his whole life and no history of cardiac events we were really blindsided. With medication and support from his team, he is now back to sports and working out 6 days a week. Moving his body everyday means so much to him so this challenge is a great opportunity to get our family involved to support him!
My name is Stephanie and both my husband and daughter have been diagnosed with LQTS1. I am so thankful for this resource and the research that continues to come out!
I am 56 years old. I was diagnosed with LQT type 2 and 5 at age 39. I take a beta blocker and have an ICD implanted.
Hi! I’m Kellie. I’m a SAHM with 2 kids, one of whom also has LQTS. I was diagnosed with LQTS Type 2 as a child, so it has always been part of my life. I’m excited to get moving together!
Hi Everyone Frances here I have ARVC with LQTS.I have an ICD.It will be great to keep each other lifted up
Hello. I was diagnosed with ARVD in 2018 and had an S-ICD implanted around that same time. I was 38 at the time. I am looking forward to connecting with others as having a heart condition can be isolating.
Hello! I’m Julia and I was diagnosed with ARVC February 2020, and was actually released on Valentines Day! I’m excited to connect with others and looking forward to walking with everyone!
I’m so excited to participate in the movement challenge! I am 43 y/o and diagnosed with ARVC at 34. I am having my first ICD battery replacement to start heart month, so my first few days will be gentle movement and more mental health focused…but it really emphasizes how ANY type of movement and self care is so important for those of us with SADS conditions! Can’t wait to connect with so many of you and to encourage my friends and family to move along with us! 🙂
Hi Regina, I hear you have an ARVC team. I’ve signed up for the challenge and was recently diagnosed with ARVC. I’d love to join your team if there’s room! Sarah
Hi Sarah! I’m not exactly sure how the teams work yet haha but it will be great to see how all of us with ARVC are continuing to take care of ourselves! And if we figure it out of course you are welcome!
My name is Melissa. I am a 41 year old woman diagnosed with LQTS 1 at the age of 24. I used to power lift and am working towards getting back into that. I’m looking forward to this challenge and meeting others.
Hi! I’m Julia, I’m 17 and have Long QT 1. I am a competitive swimmer and am continuing my career as a collegiate swimmer. When first diagnosed, I was told competitive sports, let alone college sports, were out and want to help show others that is not the case!
I’m Amie,
I was diagnosed with CPVT and Dilated Cardiomyopathy at 29, last June after my second SCA. I was fitted with an S-ICD and with the right medications I’m back to exercising regularly again!
Hi I’m Tracy I’m 32 and my son Henry 4 months both I have LQTS type 1 along with several family members.
I was diagnosed at age 8 after SCA in a pool. After 2 more SCA I had an ICD in at age 13. After many shocks I was the 32 person to have the LCSD done and have been symptom free for 14 years now.
Henry and I love being out and doing things especially being at dog shows where I show my dogs and handle other peoples.
I’m excited to do this to get me back into being active more between shows.
I’m excited and definitely up for this challenge! I’m 58 yrs old and was diagnosed with ARVC in 2021- almost 3 years ago. Recently I’ve been trying to add some things like yoga and bowling to my almost daily walk routine- I think I’m going to join a gym for their treadmills, yoga classes, swimming pool and hot tub- I definitely need more light workouts/movement in my daily routine.
Hello my name is Jason. I have ARVC and was diagnosed in 2020. I’m always looking for ways to keep moving and staying healthy. I’m happy to hear SADS organizing this type of thing!
Hi – I’m Jess. I have Long QT type 2. I live in Melbourne, Australia. I have a S-ICD. Looking forward to some extra exercise motivation and connecting with others around the world facing similar life challenges, as we live with these conditions and try to stay healthy!
Hi my name is Sharon, 48 from UK. Diagnosed last year age 47 – cLQTS1 – former Les Mills combat and pump instructor. Diagnosis stopped all exercise for a while but keen to get back into the swing of things safely
I was diagnosed with LQTS in 1999 after surviving SCA. My ICD delivered a shock while running in 2020. I haven’t ran since then. I just bought a treadmill and started running 30 mins a day, 4 times a week!
I’m Jocelyn, I was diagnosed with CPVT at age 11. I’m 27 now and in medical school so that I can help others who are going through similar journeys.
Hi! I’m Taira, living in Vancouver, BC. Diagnosed with gene elusive ARVC in 2019 and had ICD put in 2023. Ironically I work in cardiac rehab. Looking forward to connecting with other ARVC folks and a fun health challenge!
Hi, I’m Ashley. I found out I have LQTS1 after my son was diagnosed. He is only 3 now, but I really want to set an example for him on how we can still live an active lifestyle with this diagnosis.
I’m Natalie, living in LaGrange Kentucky and I have LQTS type 3. I am 15 and was diagnosed last year after experiencing SCA. I now have a ICD and pacemaker but I am excited to have a semi-normal life now and experience this with others like me!
Hi, I’m 49, ARVC diagnosed 9 years ago now, with an ICD. Hoping for some motivation and accountability to help me keep moving!
I’m Charlie, LQTS diagnosed at 37 now 39. Would anyone want to join a Strava group for logging exercise? I can make a group in the app for everyone that wants to join and we can have an online community to support exercise. Check out the Strava app and let me know!
Here is a link for the SADS Strava group!
https://strava.app.link/0lLU2ArWPGb
Or download the app and search for SADS in clubs
I am 51 mom, nana, wife… I live remotely in Idaho and was diagnosed lqts1 in 2020… after a life of heart issues being blamed on anxiety. Happy to finally learn I really am not a basket case 😂
I was making great progress on my health before being diagnosed- I get bored easy with exercise, and had just found a 15 minute a day program that included HITT workout. This was the answer to my premenopausal issues until I got diagnosed, and my doctor said I could no longer do the HITT workouts. And since the diagnosis I have put on 50 pounds and scared to do just about anything
Hi all y’all! I’m Samantha, 34 yo, lawyer who was diagnosed over 20 years ago at 12/13 when sports were my entire life. I’ve had many seasons of activity/inactivity weight loss/gain in the 20+ years since my diagnosis, including some seasons of trusting my body more than others as I reacquainted with my new reality. Today, I’m still on beta blockers and this challenge is coming right on time as I’m on day 27 of another Whole 30 reset, 4-5 day week 30 min treadmill incline walks, + kicked off New Year’s with a hike as my goal for celebrating 35 this year includes completing the Virginia Trail Quest after running a half marathon requesting donations to SADS for my 25th.
Most of all, I’d just send everyone some encouragement to be kind and gracious to yourself no matter what season of activity you’re in right now and remember you can alway start again by moving some way today. Whether it’s a spin class, quality stretching, or dancing around while putting away the dishes, remember to have some fun with it!
I have LQTS 2, I have an ICD, on the beta blocker and have had the left cardiac sympathetic denervation at Mayo. Thankfully they consider mine e lightening defect as I am the only one in the family.
I have LQTS 2, I have an ICD, on the beta blocker and have had the left cardiac sympathetic denervation at Mayo. Thankfully they consider mine a lightening defect as I am the only one in the family.
My husband and two sons have LQTS type 2. We found out about it in summer of 2022 so it was a lot all at once. The SADS foundation has been a helpful resource for us!
Hi everyone! My name is Andy, I’m 39 and was diagnosed with ARVC about 6 months ago, although coming up to my 2-year anniversary of my first ICD. I was previously a recreational marathon runner, but have had to give that up obviously. I’m still very passionate about staying active, so have adjusted my exercise routine to focus more on strength and resistance training. Excited to participate in the challenge and connect with more people with ARVC/SADS conditions!
Hi, I’m Brian and I’m a 42-year-old father of three. I and two of my kids have LQTS 2. I was diagnosed 18 years ago by genetic test in due to an extensive family history, and my kids tested positive at birth. We’re fortunate to be asymtomatic, but I had some serious complications with my ICD, which I ditched six years ago. Now I play men’s league hockey and lift weights for exercise, and my 13-year-old son plays travel baseball.
Hi. My name is Aimmy Tse. I have CPVT. I looking forward to meeting others and also celebrating the Lunar New Year with my family this month.
Hi, my name is Andrew. Myself and my 2 children were diagnosed with Long Q-T Syndrome Type 1 in 2017. Throughout my teens I suffered with severe Seizures. The medical profession at that time in 1998 miss diagnosed me after I had a VF Cardiac Arrest. I was told the reason for my Arrest was a antihistamine (Hismanal which was shortly withdrawn due to Cardiac issues) and 1 tablet of Chloriqin as I was travelling to a Malaria risk country. I suffered with awful palpitations for many years until 2017 when I started a Beta Blocker. It has been quite a journey for me with this condition, but now I am aware what not to do and what medication I should not take.
It looks like I’m the oldest one in this group at age 71. I was misdiagnosed with epilepsy for 23 years. When my then 16 year old daughter was diagnosed with lqt, I was diagnosed as well. We had previously lost family members to sudden death. Dr. Arthur Moss from Rochester did a mass testing of over 100 family members. A few years later we learned with had lqt2. I take a beta blocker and have an ICD/pacemaker. We inherited the gene from my grandmother, who lived to 102 with no treatment and having 5 of her 9 children with the gene. I’m thankful that Grandma never knew she passed that gene on. It would have broken her heart. Now, live is good. I go to the gym almost daily.
Hi everyone! My 11 year old son had SCA this past summer while on vacation visiting family. He was diagnosed with CPVT and we later found out my daughter has CPVT also. They are both competitive travel ball athletes, baseball and soccer. This totally turned our world upside down but we’re managing with medicine now and hoping that is the right treatment plan. Excited to talk and meet others who might share our same situation
Week 3 I completed a 6 mile hike, lifted weights and rode my horse. I worked all 3 days at the hospital completing more than 10,000 steps each shift. I felt good except for allergies and absolute fatigue from work.