Portrait Patrons
Thank you for your support!
"We appreciate your passion and dedication to raising awareness for the rare disease community. Thank you!"
~ Troy & Rene King
Rikki
Kabuki Syndrome
Artist: Thea McElvy
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~ Amy Pillersdorf and Bob Taylor
Ashlyn
Sturge-Weber Syndrome
Artist: Wolfgang Widmoser
"This young man moves mountains even if he can’t climb them."
~ The Maughansters
Glenn
KBG Syndrome
Artist: Robert Hurst
"Baby Girl...you are our greatest gift from God. We love you, your courage, your perseverance, your smile, and the joy you bring into our lives."
~ Anonymous
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" Wonderful portrait for a wonderful cause."
~ J.P.
Allie
Parental Uniparental Isdisomy Chromosome 4
Artist: Anat Ronen
"To our nephew Tyrece and all the brave children who endure illness so young."
~ Uncle Albert & Aunt Debra Hollis
"We love you. Love Mom and Dad."
~ Ginger & Dennis Moyles
Tyrece
Arterial Tortuosity Syndrome
Artist: Tammy Murray
Chelsea
Shprintzen-Goldberg Syndrome
Artist: Mandy Peltier
Sophia
Rett Syndrome
Artist: Vivian McNeeley
"Thank you for all your hard work and dedication for raising awareness for all our children !!"
~ The LaFort Family
~ Amy & Stephen DiMuccio
~ Bobby
Siena
Prader-Willi Syndrome
Artist: Marie Laudini
"What a journey...what a lesson...this portrait speaks to a bridge in the world of rare disease. You, Sweet Emma, are such a source of light and inspiration!"
~ Mary Elizabeth Parker
Emma
STXBP1
Artist: Lawrence Gardiner
"Cora, your life and light shine on in your family!"
~ Mary Elizabeth Parker
Cora
Tay-Sachs Disease
Artist: Lori Jeremiah
Kalen & Kyan
Spinal Muscular Atrophy
Artist: Ian Gaudreau
" In honor of Kyan's 7th birthday!"
~ Doreen & Tim Ward
"Beautiful art, beautiful boys, worthy cause!"
~ The Ugarcovici Family
" Love this project to put faces to the many many mysterious mutations and diseases and diagnoses out there. No one expects to be a part of this world or gallery, but here we are."
~ The Silversteins
Ryan
ATR-X
Artist: Annette Giaco
~ Organic Acidemia Association
Dustyn
Glutaric Aciduria
Artist: Tatiana Roulin
Max S.
Noonan Syndrome
Artist: Sara Breslin
~ Anonymous
~ Cheryl Wallace Grandmother of Colin
Colin
Menkes Syndrome
Artist: Law Blank
Daine
Osteogenesis Imperfecta
Artist: Nataliya Karashchuk
"Thank you for everything you guys do!"
~ Daine's Family
"Thanks Joey for all the joy you gave our
family in your short years!"
~ Auntie Alice
Joey
F.I.R.E.S.
Artist: Shirley deLang
" May the Beyond the Diagnosis continue to spread awareness of rare disease. In memory of Noah & Laine - always in our hearts and souls."
~ The VanHoutan Family
Noah & Laine
CLN2 Batten Disease
Artist: Dan Lake
" Our sweet and precious Talynn. Love, Mimi and Pop Pop."
~ Kirk and Tina Nixon
Talynn
Bohring-Opitz Syndrome
Artist: Marie Jones
Abby
Craniometaphyseal Dysplasia
Artist: Vincent Castaldi
"We love you Abby and are waiting to see you! Your grandparents, Saba and Savta."
~ Abby’s Grandparents-Harold and Judy Liebowitz
"Abby, we love you so much! When you saw your portrait, you said you looked like the Mona Lisa... but you are even more special and beautiful! Love, mom, yoje and eli"
~ Debbie (mom), Sherrin (Yoje) and Elliot (Eli)
" We love Abby so much. She has always been a joy and inspiration."
~ Sharon and Jay Friedman
Paige
MPS VI
Artist: Jota Leal
Conner & Malia
Sandhoff Disease
Artist: Ann Bianchi
Aliyah
VACTERL Association
Artist: Lauren Rudolph
Betsi
Morquio Syndrome
Artist: Kelly Li
Malia & Callie
Undiagnosed
Artist: Law Blank
Remy
Septo Optic Dysplasia
Artist: Robert Francis Whelan
Clara
Epidermolyosis Bullosa
Artist: Brandi Twilley
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Ava W.
Fabry Disease
Artist: Jota Leal
Victor
CLOVES Syndrome
Artist: Phyllis Pesaturo
Rhaiden
Hemophagocytic Lymphohistiocytosis
Artist: Robert Francis Whelan
Curren
HIVEP2 Syndrome
Artist: Rosiland Ridley
Ava G.
Achondroplasia Dwarfism
Artist: Robin Beckwith
Theodora
Timothy Syndrome
Artist: Jennifer Cahoon
Hunter
RSS/MVA
Artist: Dan Lake
Zachary
Aarskog Syndrome
Artist: Kelliann Jarasitis
Katherine Belle
Complex 1, NUBPL
Artist: Lori Jeremiah
Olive
Alfi's Syndrome
Artist: Robert Francis Whelan
Beckett
SYNGAP
Artist: Ian Mohon
Brenna
Harlequin Ichthyosis
Artist: Beth Johnston
Savanna
7q36.1q36.3 Deletion
Artist: Beth Johnston
Luka
Primary Immunodeficiency Disease
Artist: Vivian McNeeley
Carson
Cystic Fibrosis
Artist: Charlie Hall
Eliza
Sanfilippo Syndrome
Artist: Ian Mohon
Truman
Williams Syndrome
Artist: Pam Dooley
Harper
Angelman Syndrome
Artist: Sara Breslin
Lily
Cystinosis
Artist: Debralee Iacobucci
Max B.
Krabbe Disease
Artist: Jennifer Polnaszek
Eric
Nonketotic Hyperglycinemia
Artist: Jennifer Cahoon
Devon
aHUS
Artist: Tom Hughes
Teagan
Schizencephaly
Artist: Jota Leal
Khai
Cavernous Malformation
Artist: Colin Howel
Brian
Ataxia-Telangiectasia
Artist: Colin Howel
Meghan
Hutchinson-Gilford Progeria
Artist: Jota Leal
Jett
Duchenne Muscular Dystrophy
Artist: Kate Huntington
Caleb
Macrocephaly Capillary Malformation
Artist: Serena Andrews
Iris
GM-1
Artist: Zohra Amarta
Asia
2q23.1 Microdeletion
Artist: Zohra Amarta
Haley
Landau Kleffner Syndrome
Artist: Nancy Gaucher Thomas
Hannah
Incontinentia Pigmenti
Artist: Susan Bennett
Francesca
ADCY5
Artist: Jota Leal
Guiliana
Apert Syndrome
Artist: Vivian McNeeley
Kylie
Pompe Disease
Artist: Sara Breslin
Megan
18q- Syndrome
Artist: Megan Pugh
Caliee
Familial Exudative Vitreoretinopathy
Artist: Jacob Gorke
Rob
Blue Rubber Nevus Syndrome
Artist: Susan Klas Wright
Benjamin
Congenital Hyperinsulinism
Artist: Nina Raskin
Miriam
Moebius Syndrome
Artist: Lori Jeremiah
Noah
Gaucher Disease
Artist: Ian Mohon
Austin & Max
Duchenne Muscular Dystrophy
Artist: Dan Lake
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Sarah
Stickler Syndrome
Artist: Carol Scavotto
Aidan
Ectodermal Dysplasia
Artist: Nan Kruzik
Lydia
DEND Syndrome
Artist: Kathy Noble
Vanessa
Usher Syndrome
Artist: Vivian McNeeley
Bly & Ty
Barth Syndrome
Artist: Piotr Wirkijowski
Avery
Microvillus Inclusion Disease
Artist: Dimitry Gritsenko
Luke
Undiagnosed
Artist: Ed Capeau
Jaylyn
Bilateral Perisylvian Polymicrogyria
Artist: Pawel Ber
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Sophie
Wiedemann-Steiner Syndrome
Artist: Clark Ocampo
Arshaan & Jahan
Jansen Type Metaphyseal Chondrodysplasia
Artist: Jennifer Cahoon
Mason
Undiagnosed
Artist: Kevin Wasden