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

~ Amy Pillersdorf and Bob Taylor

Ashlyn

Sturge-Weber Syndrome

Artist: Wolfgang Widmoser

"To our nephew Tyrece and all the brave children who endure illness so young."

~ Uncle Albert & Aunt Debra Hollis

Tyrece

Arterial Tortuosity Syndrome

Artist: Tammy Murray

"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 

" Wonderful portrait for a wonderful cause." 

~ J.P. 

Allie

Parental Uniparental Isdisomy Chromosome 4

Artist: Anat Ronen

"We love you. Love Mom and Dad."

~ Ginger & Dennis Moyles

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

     www.oaanews.org

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

Malia & Callie

Undiagnosed

Artist: Law Blank 

Clara

Epidermolyosis Bullosa

Artist: Brandi Twilley

Betsi

Morquio Syndrome

Artist: Kelly Li

Remy

Septo Optic Dysplasia

Artist: Robert Francis Whelan

Ava W.

Fabry Disease

Artist: Jota Leal

Victor

CLOVES Syndrome

Artist: Phyllis Pesaturo

Curren

HIVEP2 Syndrome

Artist: Rosiland Ridley

Theodora

Timothy Syndrome

Artist: Jennifer Cahoon

Zachary

Aarskog Syndrome

Artist: Kelliann Jarasitis

Olive

Alfi's Syndrome

Artist: Robert Francis Whelan

Brenna

Harlequin Ichthyosis

Artist: Beth Johnston

Luka

Primary Immunodeficiency Disease

Artist: Vivian McNeeley

Eliza

Sanfilippo Syndrome

Artist: Ian Mohon

Rhaiden

Hemophagocytic Lymphohistiocytosis

Artist: Robert Francis Whelan

Ava G.

Achondroplasia Dwarfism

Artist: Robin Beckwith

Hunter

RSS/MVA

Artist: Dan Lake

Katherine Belle

Complex 1, NUBPL

Artist: Lori Jeremiah

Beckett

SYNGAP

Artist: Ian Mohon

Savanna

7q36.1q36.3 Deletion

Artist: Beth Johnston

Carson 

Cystic Fibrosis

Artist: Charlie Hall

Truman

Williams Syndrome

Artist: Pam Dooley

Harper

Angelman Syndrome

Artist: Sara Breslin

Max B. 

Krabbe Disease

Artist: Jennifer Polnaszek

Devon

aHUS

Artist: Tom Hughes

Khai

Cavernous Malformation

Artist: Colin Howel

Meghan

Hutchinson-Gilford Progeria

Artist: Jota Leal

Caleb

Macrocephaly Capillary Malformation 

Artist: Serena Andrews

Asia

2q23.1 Microdeletion

Artist: Zohra Amarta

Hannah

Incontinentia Pigmenti

Artist: Susan Bennett

Guiliana

Apert Syndrome

Artist: Vivian McNeeley

Megan

18q- Syndrome

Artist: Megan Pugh

Rob

Blue Rubber Nevus Syndrome

Artist: Susan Klas Wright

Lily

Cystinosis

Artist: Debralee Iacobucci

Eric

Nonketotic Hyperglycinemia

Artist: Jennifer Cahoon

Teagan

Schizencephaly

Artist: Jota Leal

Brian 

Ataxia-Telangiectasia

Artist: Colin Howel

Jett

Duchenne Muscular Dystrophy

Artist: Kate Huntington

Iris

GM-1

Artist: Zohra Amarta

Haley

Landau Kleffner Syndrome

Artist: Nancy Gaucher Thomas

Francesca

ADCY5

Artist: Jota Leal

Kylie

Pompe Disease

Artist: Sara Breslin

Caliee 

Familial Exudative Vitreoretinopathy

Artist: Jacob Gorke

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

Aidan

Ectodermal Dysplasia

Artist: Nan Kruzik

Vanessa

Usher Syndrome

Artist: Vivian McNeeley

Avery

Microvillus Inclusion Disease

Artist: Dimitry Gritsenko

Jaylyn

Bilateral Perisylvian Polymicrogyria

Artist: Pawel Ber

Arshaan & Jahan

Jansen Type Metaphyseal Chondrodysplasia

Artist: Jennifer Cahoon

Sarah

Stickler Syndrome

Artist: Carol Scavotto

Lydia

DEND Syndrome

Artist: Kathy Noble

Bly & Ty

Barth Syndrome

Artist: Piotr Wirkijowski

Luke

Undiagnosed

Artist: Ed Capeau

Sophie

Wiedemann-Steiner Syndrome

Artist: Clark Ocampo

Mason

Undiagnosed

Artist: Kevin Wasden

Beyond the Diagnosis

P.O. Box 16534 Rumford, RI 02916

Tel: 401-434-0052

info@beyondthediagnosis.org

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©2019 Beyond the Diagnosis

This program and exhibit are proprietary to Beyond the Diagnosis.  Any reproduction of any portion of this program and exhibit are expressly prohibited without permission of Beyond the Diagnosis.