Hope
for Kiri
Help Us Save Kiri’s Life – Just One Swab Could Be the Miracle He Needs 💙
Live Swab Test Events
If you are 18-40 years old, you can take a cheek swab test at these events:
Utah
Utah
California
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Utah
NOTICE!!
We still do NOT have a match! If you have a completed kit in your possession - please drop it in the mail ASAP so the registry can receive and test in time! Thank you for your amazing love and support!
We are running out of time to save our sweet, joyful Kiri.
Kiri is just 3½ years old. He has been diagnosed with Cerebral ALD, a devastating and aggressive brain disease—some of you may remember it from the movie Lorenzo’s Oil. Without a donor match transplant, this disease is fatal.
Cerebral ALD, a rare, aggressive brain disease that attacks healthy children without mercy. It begins by silently destroying the brain—stealing speech, movement, and vision—until the body shuts down completely.
Without your help in finding a donor match, Kiri could start losing critical functions within months, and his life expectancy without a match is just 2 to 4 years. We hope you will help us find a match soon.
According to his doctor, as discussed on July 28th, 2025, the deadline to begin treatment is September 8th, 2025. This only gives us a couple weeks to find a match. We are up against a deadline and action and diligence is extremely important.
KIRI NEEDS A DONOR MATCH... IMMEDIATELY.
With deepest gratitude and urgency,
Jazmynn Pok & Anthony Duke-Rosati,
and Kiri’s siblings, Nora & Rocco
Locations
If you are 18-40 years old, swab kits can be picked up at the following locations:
( SALT LAKE CITY )
Crema Coffee & Soda
2112 East 1300 South | Salt Lake City, UT 84108
Monday thru Saturday : 7am - 7pm
Sunday : 7am - 5pm
( SALT LAKE CITY )
Katie Waltman Boutique
2108 East 1300 South | Salt Lake City, UT 84108
Monday-Saturday : 9am - 7pm
( SALT LAKE CITY )
Mochi Kids
932 E 900 S Unit A | Salt Lake City, UT 84105
Monday - Thursday: 10am - 7pm
Friday - Saturday: 10am - 8pm
Sunday: 10am - 5pm
( SALT LAKE CITY )
Picnic Cafe
1329 S 500 E | Salt Lake City, UT 84105
Monday - Friday: 8am - 2pm
Saturday - Sunday: 8am -3pm
Wednesday - Friday: 5:30pm- 9pm
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(PARK CITY)
Boneyard Saloon
PROMO: Complete the swab kit there and get a same-day free lunch voucher
1251 Kearns Blvd, Park City, UT 84060
ONLY Wednesday, August 20, 2025
11:00am - 2:00pm
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( MURRAY )
A NEW DAY SPA - MURRAY
4970 S. 900 E. Suite J | Murray, UT 84117
(801) 272-3900
Monday - Saturday: 10am-7pm
CLOSED Sunday
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( HOLLADAY )
FOUNDATIONS Real Estate (Residence)
5281 S. Holladay Blvd. | Holladay, UT 84117
(801) 259-8035
Monday - Sunday: 8am-9pm
On front porch
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( MIDVALE )
Realty ONE Group Signature
7650 S Union Park Ave | Midvale UT, 84047
Monday - Friday: 9am - 5pm
CLOSED Saturday & Sunday
( MIDVALE )
Tres Gatos Coffee
7567 S Main St | Midvale, UT 84047
(801) 403-8351
Monday - Friday: 6am - 4pm
Saturday: 7:30am - 5pm
Sunday: 7:30am - 3pm
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( DRAPER )
Realty ONE Group Signature
13894 S Bangeter Pkwy Suite 150 | Draper UT, 84020
(385) 337-1201
Monday - Friday: 9am - 5pm
CLOSED Saturday & Sunday
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( SOUTH JORDAN )
Bees Game, First Responders Night
The Ballpark at America First Square
11111 S Ballpark Dr | South Jordan, UT 84095
ONLY Wednesday, August 20, 2025
First Pitch: 7:05pm
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(AMERICAN FORK)
Kahi Sushi
734 W 100 N | American Fork, UT 84003
M - Thursday: 11:30am - 9:00pm
Friday: 11:30am - 10:00pm
Saturday: 12:00pm - 10:00pm
Closed Sunday
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( VERNAL )
ONE Group Signature - VERNAL
418 E Main St | Vernal, UT 84078
(435) 781-2500
Monday - Friday: 9am - 5pm
CLOSED Saturday & Sunday
__________
(WEST HAVEN)
Just Love Coffee
2970 W 4000 S, West Haven, UT
Monday - Friday: 5:00am - 4:00pm
Saturday & Sunday: 6:00am - 3:00pm
( LONG BEACH )
TRENDS REAL ESTATE OFFICE
2135 N. Bellflower BIvd.
Long Beach 90815
M-F 10am to 4pm
Sat/Sun closed
__________
SoCal Single-Day Events
(CHINA TOWN LOS ANGELES)
711 W. College Street, Suite 100
ONLY Thursday, August 21, 2025
9:00am- 12:00pm & 1:00pm- 3:00pm
(MONTEREY PARK)
855 S. Atlantic Blvd
ONLY Saturday, August 23, 2025
9:00am- 12:00pm & 1:00pm- 3:00pm
(ALHAMBRA, CA)
CSC Health Center
726 E Main St. Suite B | Alhambra, CA 91801
ONLY Monday, August 25, 2025
9:00am- 12:00pm & 1:00pm- 3:00pm
__________
( SAN DIEGO )
Staci
853 Camino De Mar, Suite 100 | Del Mar, CA 92014
Saturday : 10:00am - 1:00pm
__________
( SANTA MONICA )
Dogtown Coffee
2003 Main Street | Santa Monica CA 90405
Monday - Sunday: 7am - 2pm
H & H BAGELS
710 Montana Ave, Santa Monica, CA 90403
Monday - Sun 6am - 4pm
Mariesa
801-674-6083
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( COSTA MESA )
Christina
801-918-0213
__________
( Newport Beach)
Skin Laundry
240 Newport Center Drive Suite 117
Newport Beach, CA 92660
801-918-0213
Mon - Sat 8:30 AM–7 PM
Sun Closed
( NEW YORK )
Leather Spa
55 West 55th Street | New York, NY 10019
212.262.4823
Mon - Fri: 8am - 7pm Saturday: 10am - 6pm
Sunday: Closed
( NYC )
Monica
(801) 870-1230
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(ANTHEM / NORTH PHOENIX VALLEY AREA)
Call or email Matt to coordinate swab pick up
763-406-3229
More Coming Soon
( LAS VEGAS, NV )
595 Craft and Kitchen
4950 S Rainbow Blvd #100 | Las Vegas, NV 89118
Sunday - Thursday : 11:00am - 1:00Am
Friday - Saturday : 11:00am - 2:00Am
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( NEW JERSEY )
The Smile Stop
139A Kinderkamack Road | Park Ridge, NJ 07656
Monday - Thursday: 9:00am - 6:00pm
Friday: 9:00am - 2:00pm
Closed Saturday and Sunday
(201) 391-8516
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( SEATTLE )
Magnolia Village Pub
PROMO: Complete a swab and receive half off all appetizer orders (with a max of two orders per family)
3221 W McGraw St | Seattle, WA
ONLY Sunday August 24th
12:00pm-2:00pm
( SEATTLE )
Contact Makara for a kit:
(801) 865-9394
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If you are interested in hosting a donor registration event in your city/state in the next couple of weeks in honor of Kiri please complete this form and an NMDP Engagement Specialist will be in touch with you Connect with your NMDP representative by completing this form:
Searching Patient Engagement Form
For those Outside of These Local Test Locations
Bone Marrow Match Process
While ALD currently has no cure, a blood or marrow transplant (BMT) halts the progression of the disease and can prevent further damage to the brain, spinal cord and nervous system. BMT replaces unhealthy blood-forming cells with healthy ones, allowing the body to protect against additional complications. Although the transplant cannot reverse existing damage, it plays a vital role in preventing further progression.
- Bone Marrow matches are identified through a global registry.
- You must be a person between the ages of 18 and 40
- Because of his mixed-race heritage, those with partial Cambodian and/or Italian ancestry are especially encouraged to test—you may be Kiri’s best chance.
What Does the Registry Process Look Like?
- Join the registry: Click here
- Fill out a short 2 minute questionnaire.
- Upon completion, you are now REGISTERED with the Donor Registry.
- 📬 A Free Swab Kit will come to you in the mail
- 🧬 Swab the Inside of Your Cheek
- 📮 Return in the Pre-Labeled Envelope
- 🙏 DONE and THANK YOU!
Your cheek swab is processed, added to the global database, and if you are a match for Kiri, his team will be notified immediately!
If you are a match, what happens next…
Bone Marrow Harvest (surgical method)
Under general anesthesia, marrow is collected from the back of your pelvic bone using a needle.
Pain Level
- During: No pain during the procedure because you're under anesthesia.
- After: Soreness or bruising in the lower back area for a few days to a week. Most donors describe it like muscle soreness from a fall or hard workout.
- Recovery: Most return to normal activities within a few days, though full recovery can take 1–2 weeks.
Summary
- Pain level: Mild to moderate, temporary discomfort.
- No long-term pain or major risks in healthy donors.
- Kiri’s Doctors have confirmed that most donors say the experience is manageable and worth it to help save a life.
KIRI’s Cerebral ALD Journey
Born a healthy, beautiful baby boy on March 23, 2022, Kiri underwent the normal list of medical procedures typical of all newborns. However, the heel prick test revealed a devastating result. The test showed Kiri has an ABCD1 gene mutation which had a high probability of being adrenoleukodystrophy (ALD).
At this time, Utah had just added ALD/ABCD1 testing to the newborn screening beginning in 2020. While we felt very fortunate of this mutation discovery through newborn screening, we nevertheless did not expect it to develop into the severe situation we are facing today.
Looking at Kiri today, you would never know, and he clearly does not know, what is ahead for him. With your help, we can make this challenging process the best that we can for little Kiri-Man.
More about ALD
ALD can manifest in zero, one, two or three ways, with the most severe being cerebral ALD (CALD). CALD affects the brain, typically during childhood. It occurs in about 1 in 21,000 boys between ages 4 and 10, affecting about 35 to 40 percent of boys with the ABCD1 mutation.
On July 23, 2025, Kiri’s routine bi-annual MRI showed evidence of early CALD and we are now mobilizing to treat him through bone marrow transplant in the fall of 2025.
What the Bone Marrow Replacement Process looks like for Kiri.
Treatment begins with chemotherapy (and sometimes radiation) to remove unhealthy cells in the bone marrow. This step creates space for the donor cells to engraft and function properly.
Healthy donor cells are infused into the patient’s bloodstream which then migrate to the bones, where they begin producing healthy blood-forming cells.
Recovery can take several months and requires close monitoring to manage potential complications.
Stats
70% of patients** in need do not have a matched donor from their family and must rely on unrelated registries
The long-term survival rate for children who undergo a BMT depends on the disease being treated... for genetic diseases, the rate is 80 to 95%.
CALD is a rare disease occurring in only about 1 in 63,000 boys between ages 4 and 10.
