No Shortcuts TT - LAPS23
Donation protected
UCLA's Infantile Spasms Research
No Shortcuts TT is a relay race, it's a fun weekend away but we also love to tie it in with fundraising. It's a monumental effort, teams of 6-8 (maybe even a team of 2) running 130 miles in relay. If you've arrived here, then you probably know someone doing it so thank you for considering a donation.
Last year we twice raised for Girls on the Run LA, which is a great cause and ties in so well with the race concept. However personal experiences in our lives (Alex race organiser and wife, Ahnna) over the last year means that we'd like to focus on another cause this time...
As you know fundraising has become a big part of AMP identity over the last couple of years, we donate our late cancel / no show fees every month. Plus we’ve done some larger fundraising events with our million meters and piggybacking fundraising onto the No Shortcuts relay races we organise.
Although we have donated to some great charities we’ve been wanting to find a cause closer to home, something where we can work closely with them to see where the money goes… so wanted to share this with everyone.
We normally really don’t like to draw attention to ourselves or self-promote too much, but as time has gone by we’ve come to realise that it’s our duty to raise awareness on this issue.
When our daughter, Peggy, was 2 months old she was diagnosed with infantile spasms. Like most people, we had never heard of it but it was our feared worst-case scenario when we took her to the emergency room.
It’s a rare form of epilepsy in young children that has potentially a catastrophic impact on a childs development - only 1 in 5 cases have a 'positive outcome'. The other 80% have developmental delays which result in physical and mental disorders. Even with ‘better’ outcomes, it requires long-term treatment, check-ups and can present itself in other ways as the children grow up. We’ve spent a lot of time in the hospital over the last year with Peggy trying to keep it under control… so far we are very hopeful that Peggy is going to have a positive outcome and live a normal happy life. She initially responded well to mild treatment in January, but then relapsed in March of last year and had to go through 2 months of a much more aggressive medication alongside another anti-seizure medication that she is still taking today.
So whilst we are optimistic, she is still on medication and there’s a worry of what happens when that ends and whether anything will present itself as she grows up. 50% of successfully treated cases relapse in the first year… and we are almost at the end of that year.
This is and will be an ongoing worry for us for years to come.
By chance we took Peggy into UCLA ER last January, they just so happen to have one of the world leading children's neurology departments and a Dr that specialises in treating and the research behind infantile spasms. Having gone through this, we have been involved in some fundraising efforts to help the cause and recently had a call with Dr Hussain about it.
Going through the treatment time and time again we hear the Drs say, we just don’t know enough about it. The brain is so complicated and even the medication they give, they don’t fully understand why it works. It’s also hard for them to get funding on it because it’s a largely unknown condition.
We saw the Drs hit list for fundraising so we know exactly where every $ raised will go for this, it’s not just giving a donation to a foundation. Any money raised here is directly working towards research and development for infantile spasms.
Sooo we will be gearing our next few fundraising efforts towards this to try and raise some money for a cause that's become close to our hearts AND to raise awareness on it.
Raising awareness and knowledge of it is probably even more important than the $ we raise… so please take the time to read/watch below and share.
https://www.uclahealth.org/medical-services/pediatric-neurology/clinical-services/infantile-spasms-program#:~:text=The%20UCLA%20Infantile%20Spasms%20Program,alternative%20approaches%2C%20and%20neurodevelopmental%20assessment.
Organizer
Alex Hope
Organizer
Santa Monica, CA