Sedona Butterfly Effect

01/11/2025

LA CP families, please reach out if you’re in need of temporary housing 🙏❤️ we’d love to help.

12/03/2024

Thank you to our donors, friends, families, and supporters this year. Below is an update on our accomplishments for the year.

Therapy Programs

Over the course of this year, we have awarded 17 grants for cutting-edge physical and occupational therapy to families who have young children with cerebral palsy. Four of the children have completed their awarded therapy sessions. See what their parents had to say!

New Services

As you can imagine, its already difficult physically, emotionally, and financially to provide the basic needs and care for a child with cerebral palsy. Oftentimes, at least one parent is unable to work; parents suffer from caretaker fatigue and emotional exhaustion; and bills for medical needs, equipment, and therapy pile up quickly. I recall that we spent $90,000 in just 9 months trying to get Sedona therapy met—exclusive of medical and caretaker expenses.

Earlier this year, we replaced our therapy grant program with a program that helps families of children with cerebral palsy help themselves. Going forward, our permanent program now provides crowdfunding coaching services to help families who have children with cerebral palsy plan and launch GoFundMe campaigns in order to fundraise from their own network of friends, family, and community. The funds all go towards their child’s care, therapy, equipment, and other needs. In addition to coaching, we provide matching funds to incentivize donations, and are able to use our 501(c)3 status to accept corporate matching donations and provide tax deductions to donors.

We piloted the first two of these campaigns earlier this year. Our first family, that of Baby Russell, blew it out of the water, raising $85K. Prior to raising the crowdfunding campaign, the child’s neurologist recommended 1:1 full-time at-home care for the child, which the family didn’t know how could afford. With the campaign funds, the family has been able to afford a 1:1 caretaker for their child and send their child to 2 therapy intensives at NAPA. “Before connecting with SBE, we felt constantly lost and overwhelmed. They helped us navigate our new lives and elevated our GoFundMe past anything we ever dreamed it could be. We can now provide our child with therapies and equipment that used to be out of reach and we see progress everyday. SBE changed our lives!” says the child’s mother, Martine.

You can read more about the successes of the first two campaigns on our blog! https://www.sedonabutterflyeffect.org/blog

New website
Lastly, many thanks to JetFuel Agency, who helped us redesign and launch our new website! Check it out at sedonabutterflyeffect.org.

Giving Tuesday
If you participate in Giving Tuesday, please help us help more families through a donation or hosting a fundraising event! Donations can be made through Venmo, Paypal, GoFundMe, corporate donations, or by check. Details at https://www.sedonabutterflyeffect.org/contribute

11/16/2024

It's taken a while, but we finally re-designed the Sedona Butterfly Effect website! Many thanks to the team at JetFuel.Agency! You can see it here: https://www.sedonabutterflyeffect.org/

Will post some more updates of what we've been up to soon!

In memory of our beloved daughter Sedona, who made incredible motor achievements in her lifetime despite her medical history, our mission is to help underserved families with babies like Sedona that are at-risk or diagnosed with cerebral palsy achieve their full potential by providing resources for....

10/19/2023

Hi friends, if you donated to Sedona Butterfly Effect at any time this year, I just emailed your a receipt for your tax deductible donation. If you don't see it, please check your spam (or message me and we'll figure out what the issue is). Apologies for the delay--it took a while to get 501(c)3 status and get organized. We and the families in our program thank you for making a big difference in their lives

07/28/2023

A big congratulations to our niece and Sedona’s cousin Alex Knopf, who won the Award of Excellence for Best Documentary Short for the 2023 SoCal Film Awards! She’s only 17, and it was chosen from amongst 20,000 submissions!

You can watch it at https://vimeo.com/837249974?share=copy

07/24/2023

Today marks 6 months since Sedona passed. In another two weeks, it’ll be her 2nd birthday.

Yet, so much has happened, it seems like its been a year or two since she left us.

Jonar and I have both made dramatic life changes—for the better—in every department, from career to diet to spirituality. I find myself busy as ever, even though I’ve left my business, supporting Jonar in his new endeavor, spending time with Thomsan, doing my own healing work. I’ve reorganized the entire house and planted a butterfly and hummingbird garden in the backyard.

And I’ve been working on Sedona Butterfly Effect—now a 501(c)3 organization. Back when we were in the NICU, I dreamt of one day bringing Sedona back to the NICU on her 2nd birthday and proudly showing the NICU staff that she could walk. Although that isn’t meant to be, we are excited to officially launch the non-profit programs in two weeks on her 2nd birthday in the NICU. We have selected a grant recipient for the cutting-edge early intervention therapy program, and have 15 families from around the world—the US, UK, Canada, Australia, India, and Ghana—eager to follow along in the therapy program virtually.

And its hard to describe in mere words, but I know Sedona is on the other side, helping to orchestrate much of this.

07/15/2023

We have a couple spots left in the upcoming cohort for our FREE virtual therapy program, which starts in a couple weeks. This particular cohort is targeted towards babies who have poor neck/trunk control and are not yet rolling or sitting and are at-risk of cerebral palsy (prematurity, brain bleed or injury, HIE, meningitis, etc.).
To learn more and apply, click here: https://forms.gle/p7YrP4ESFbd1uixz7
Sending love and light to you all in this group who fight the good fight everyday 💗.

05/04/2023

Bring your families and friends on Tuesday, May 30 at Jimmy E’s Bar & Grill in Long Beach for our restaurant fundraiser! 20% of proceeds from food and (non-alcoholic) beverages will go towards , whether its take-out or dine-in. That day also happens to be their Taco Tuesday and Kids-Eat-for-$1 day and Happy Hr/99cent wings (before 6pm). We’ll be there most of the evening, so come say hi!

05/03/2023

We are starting two therapy programs for cutting edge early-intervention physical and occupational therapy for babies who are at-risk of cerebral palsy and have poor neck/trunk control and are not yet rolling or sitting.

Common causes of cerebral palsy (i.e. your baby would be high risk): meningitis, brain bleed (intraventricular hemorrhage), brain injury, lack of oxygen (HIE), etc.

Virtual Therapy Program (free, anywhere): Families will have access to a 3-month program with weekly video trainings on dynamic movement intervention (DMI) therapy exercises to improve neck/trunk control and meet developmental milestones. This program is free. In exchange for access to the program, we ask for a commitment to try the program for at least 3 months and weekly feedback on the videos, so that we can continue to modify and improve the program for future families. If you are interested in this program, please apply here: https://forms.gle/sZ1jCEfGzeQnSPGX7

In-Person Grant Program (Los Angeles only): This program involves in-person visits to a therapy clinic in Los Angeles to participate in the cutting edge therapies that helped our child develop miraculous motor progress despite her right sided head bleed and subsequent cerebral palsy diagnosis. Therapies may include dynamic movement intervention (DMI) and electrical stimulation (E-STIM), as appropriate. Occupational therapy will be conducted by Dr. Marielly Mitchell of Theraplay LA (theraplayla.com) and physical therapy will be conducted by Jennifer Swan (jennyswanpt.com), both of whom are former therapists from NAPA Center LA.

The grant recipient family will receive a partial scholarship for subsidized physical and/or occupational therapy in exchange for the ability of our team to film/video the therapy sessions for other families to follow-along virtually. The family should be located in/near Los Angeles, have reliable transportation to participate in this program, and commit to practicing therapy exercises at home. To apply for this program, please apply here: https://forms.gle/AGSc3E6GonS4StsR9

Sedona Butterfly Effect is a non-profit (501(c)3 status pending) aimed at improving the outcomes of babies at risk of cerebral palsy, in memory of our daughter Sedona de Guzman, who had miraculous motor achievements despite her medical diagnosis.

Neuroplasticity, or the ability of the brain to rewire itself, is at its highest in the first few years of life. That is why early intervention therapy is so important for babies at risk of cerebral palsy. Sedona Butterfly Effect is currently offering two programs for cutting edge early-intervention...

05/02/2023

Over 100 families responded to our survey on cerebral palsy. Here are some of the results:

38% of families found out their baby was at risk of cerebral palsy in the NICU. Other places include:
Neurologist (31%)
Other health professional (18%)
Other (12%)

68% of families wished for more community in the early days. Other wants included:
Medical advocacy support (66%)
Access to therapy (65%)
Government advocacy support (54%)
Post-NICU care support (42%)
Respite (41%)

93% report they would have benefited from a roadmap of what to expect for CP

82% would implement cutting edge therapies at home if given better access

25% of families reported having trouble getting a formal CP diagnosis

Thank you all who responded!

04/08/2023

Congrats to Ariela and her son Leon on winning our $50 survey raffle, and thanks to all who filled it out. We received over 100 entries and will publish results soon 🦋