#1p36deletionsyndrome

[omsweet0m]

Not so #SocialSaturday - happily keeping to herself. . .#socialdistancing #creative # silly #daughter #kids #spawn #dadsofinstagram #raddads #dadlife #couchadventures #urbanadventures #playtime #inside #indoorfun #insidefun #indoors #1p36BellaBoo #PrincessBella #1p36BellaM #1p36DeletionSyndrome #1p36DSA #Monosomy1p36 #1p36 (at Long Beach, California) https://www.instagram.com/p/B-ArYUjp4gH/?igshid=xsfji6r9e3mr

[themarlyq]

Today is World Rare Disease Day and I have been PARKing all day wearing my PEACE. LOVE. HEALTH shirt to spread #awareness #scarlettsvoice #1p36deletionsyndrome #wepark #leapyear #worldrarediseaseday

[omsweet0m]

It's #WorldRareDiseaseDay - celebrate the rarest day of the year accordingly. This special day is in honor and for awareness/support of people affected by rare diseases and disorders. For more info, check out: https://bit.ly/2BqnlBI c/o rarediseaseday.org 🙌 for #1p36DeletionSyndrome (www.1p36dsa.org) and all #chromies that struggle to gain attention or funding. Here's to spreading a bit more awareness. = ) #RareDiseaseDay #WRDD #WorldRareDiseaseMonth https://globalgenes.org/ #GlobalGenesDay #GlobalGenes #RareDisease #WearThatYouCare #WearBecauseYouCare #1p36DSA #1p36BellaBoo #1p36BellaM #chromosomedisorderawareness #Monosomy1p36 #1p36 #1p36Deletion #chromosomedisorder #CareAboutRare #ShowYourRare #WRDD2020 #EagleRare #bourbon #whiskey (at Long Beach, California) https://www.instagram.com/p/B9LYxjVJXg_/?igshid=vgyqm3m7e0qq

[omsweet0m]

World Rare Disease Month is winding down to #WorldRareDiseaseDay on the last day of Feb - the 29th being the rarest day of the year. It's a celebration of observance, awareness and support of people affected by rare diseases and disorders. For a little more info, check out: https://bit.ly/2BqnlBI from rarediseaseday.org Honoring my daughter who has #1p36DeletionSyndrome (www.1p36dsa.org); her and her #chromies face their own personal challenges, but collectively struggle with gaining attention (raising awareness and helping doctors learn about them) and funding (it's a bit easier to raise funds for something well known). Here's hoping this spreads a bit more awareness. = ) For info on #RareDiseaseDay, #WRDD and #WorldRareDiseaseMonth, visit https://globalgenes.org/ #GlobalGenesDay #GlobalGenes #RareDisease #WearThatYouCare #WearBecauseYouCare #1p36DSA #1p36BellaBoo #1p36BellaM #chromosomedisorderawareness #Monosomy1p36 #1p36 #1p36Deletion #chromosomedisorder #CareAboutRare #ShowYourRare #WRDD2020 (at Long Beach, California) https://www.instagram.com/p/B8-iMbWhKpN/?igshid=1msvj2bvvlz2u

[omsweet0m]

Open house and donor #fundraiser at @tichenorclinic tonight - surrounded by wonderful, giving people that have come together for a really, really good cause. Truly thankful for many here as they've helped #1p36BellaBoo with #therapy and more. . #childrensclinic #PrincessBella #PrincipessaBella #1p36BellaM #1p36DeletionSyndrome #1p36DSA #Monosomy1p36 #1p36 #raredisease #chromosomedisorderawareness (at Tichenor Clinic for Children) https://www.instagram.com/p/B4llf1WglOU/?igshid=137zcqxz4a8ux

[omsweet0m]

F* Cancer! I'm riding throughout June to raise $ to fight against children's #cancer.  greatcyclechallenge.com/Riders/JonMarshall Check out the link if you're interested in donating or sign up if you'd like to consider riding (solo or join my team Gears n Beers). 🍻🚵 With unquestionably the best #beer to pair, I'm lifting up the aptly named #IPA from @silvermoonbrewing - who is spearheading their own fight by raising funds from all $ spent on this beer, its merch and events to go directly to cancer prevention, education and research. 👏🤘 (check out their page and find F* Cancer IPA between N CA and WA). #Fcancer *Giving a nod to my friends and family dealing with the chromosome disorder #1p36DeletionSyndrome - #1p36DSA support and awareness all the time. www.1p36dsa.org P.S. Props to @klipschaudio earbuds for great sounding tunes while always riding, much of @ramindjawadi_official @gameofthrones soundtrack to amplify what would otherwise be fairly normal to epic ventures. 🎶 @greatcyclechallengeusa #GreatCycleChallenge #GCCUSA #optoutside #getoutside #getoutstayout #fundraiser #fundraising #WhereToNext #bikeride #bike #ride #bicycle @giantbicycles @giantbicyclesusa #mountainbike #outside #outdoors #gameofthrones #music #bikingadventures #adventureculture #MyMadness @giverjh (at Long Beach, California) https://www.instagram.com/p/ByWckPVAu0Y/?igshid=7ub3iljfcjxs

[omsweet0m]

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A post shared by Jonathan Marshall (@omsweet0m)

#FlashbackFriday #dadsofinstagram #raddads #dadlife #daughter #love #QT #smiles #happy #kids #ride #PrincessBella #PrincipessaBella #1p36BellaBoo #1p36BellaM #1p36DeletionSyndrome #1p36DSA www.1p36dsa.org #Monosomy1p36 #1p36 #raredisease #chromosomedisorderawareness (at Knott's Berry Farm) https://www.instagram.com/p/BzjDtBXFt7u/?igshid=1sd3nd6kfrgf5

[omsweet0m]

A quick cap to #RareDiseaseDay #ilovesomeonerare #WRDD2017 #1p36BellaM #1p36BellaBoo #monosomy #1p36 #raredisease #1p36DeletionSyndrome #1p36DSA #genetic #chromosome #disorder #GlobalGenes

[omsweet0m]

#1p36bellaboo getting all #StarWars today, asking for the #Rey/#Jakku #hair #style and rocking her #stormtrooper mug with a #darkside red glow. May the force be with you. #everydayRey #StarWarsStyle #hairstyle #ReyHair #1p36bellam #1p36DSA #1p36DeletionSyndrome

[omsweet0m]

My daughter Bella - happy stimming. She has a chromosome disorder called 1p36 Deletion Syndrome - characterized by intellectual delays, developmental delays and growth delays among other things.  Stimming is how one’s surroundings/environment (stimuli) are processed... sometimes violently but fortunately for us it’s mostly silly and joyful.

If curious to know more about the disorder, check out www.1p36DSA.org

[omsweet0m]

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A post shared by Jonathan Marshall (@omsweet0m)

Doesn't matter if it's a tent in the backyard or #fort in the house, she's all in. .#socialdistancing #creative #habitat . #daughter #kids #spawn #dadsofinstagram #raddads #dadlife #fortlife #urbanadventures #playtime #inside #indoorfun #insidefun #indoors #1p36BellaBoo #PrincessBella #1p36BellaM #1p36DeletionSyndrome #1p36DSA #Monosomy1p36 #1p36 (at Long Beach, California) https://www.instagram.com/p/B90zm3OJ2pf/?igshid=15azwcx14t1ql