Dup 15q Alliance

Organization Overview

Dup 15q Alliance is located in Matthews, NC. The organization was established in 2004. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2022, Dup 15q Alliance employed 8 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Dup 15q Alliance is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2022, Dup 15q Alliance generated $555.1k in total revenue. This represents relatively stable growth, over the past 6 years the organization has increased revenue by an average of 8.6% each year. All expenses for the organization totaled $548.1k during the year ending 12/2022. While expenses have increased by 5.1% per year over the past 6 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Since 2017, Dup 15q Alliance has awarded 17 individual grants totaling $708,059. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2022

Describe the Organization's Mission:

Part 3 - Line 1

WE EMPOWER INDIVIDUALS LIVING WITH DUP15Q SYNDROME AND OTHER RELATED RARE DISEASES TO REACH THEIR FULL POTENTIAL BY ADVANCING BREAKTHROUGH RESEARCH AND LIFE-CHANGING THERAPEUTIC TREATMENTS, SUPPORTING FAMILIES AFFECTED BY DUP15Q, AND PROMOTING ADVOCACY. WE ENVISION A WORLD WHERE FAMILIES, CLINICIANS, AND ADVOCATES ENABLE INDIVIDUALS WITH DUP15Q TO LIVE FULL AND PRODUCTIVE LIVES.

Describe the Organization's Program Activity:

Part 3 - Line 4a

EDUCATION, OUTREACH, & FAMILY SUPPORT DUP15Q ALLIANCE HAS BEEN PROVIDING SUPPORT AND ADVOCACY TO FAMILIES AFFECTED BY DUP15Q SYNDROME FOR OVER 28 YEARS. WE CONTINUE TO OFFER A VARIETY OF RESOURCES AND SUPPORT OPTIONS TO HELP UPLIFT AND ENGAGE OUR COMMUNITY AND ASSIST FAMILIES IN NAVIGATING THE VARIOUS CHALLENGES OF THE DUP15Q JOURNEY, INCLUDING: NEW FAMILY SUPPORT CALLS WITH OUR INTAK MANAGER, WHO HELPS MENTOR NEW DUP15Q ALLIANCE FAMILIES; PARENT TO PARENT AMBASSADORS WHO HAVE COMPLETED A 6-WEEK CHILD NEUROLOGY PEER SUPPORT TRAINING IN ORDER TO SUPPORT FELLOW DUP15Q FAMILIES; LICENSED CLINICAL PROFESSIONAL COUNSELOR SERVICES AT NO COST TO OUR FAMILIES; EDUCATIONAL INFORMATION ABOUT DUP15Q SYNDROME SUCH AS SYMPTOMS, DIAGNOSIS, AND TREATMENT OPTIONS; HELP WITH FINANCIAL PLANNING AND NAVIGATING SCHOOL IEP'S; COMMUNITY CONNECTION SUPPORT GROUPS, SIBSHOPS, AND VIP SIBLING KITS FOR FAMILIES OF THOSE AFFECTED BY DUP15Q SYNDROME; REGIONAL GATHERINGS FOR FAMILIES AND CAREGIVERS; AND RESOURCES FOR THE TRANSITION INTO ADULTHOOD.


LADDER LEARNING NETWORK THROUGH ITS SPECIALIZED CLINICS, LADDER LEARNING NETWORK CONNECTS FAMILIES TO MEDICAL PROFESSIONALS ACROSS THE GLOBE WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME AND ANGELMAN SYNDROME. WITH 18 CLINICS IN THE US, SIX PARTNER CLINICS ABROAD, AND NEW CLINICS BEING ADDED, THE NETWORK INCLUDES SPECIALISTS LIKE CLINICAL GENETICISTS, GENETIC COUNSELORS, NEUROLOGISTS, PSYCHIATRISTS, PSYCHOLOGISTS, SPEECH PATHOLOGISTS, PHYSICAL/OCCUPATIONAL THERAPISTS, NUTRITIONISTS AND MORE. DUP 15Q ALLIANCE PARTNERED WITH ASF TO LAUNCH THE LADDER LEARNING NETWORK IN ORDER TO: CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS WHO HAVE EXPERIENCE IN TREATING THESE TWO RARE DISORDERS, WHICH HAS HISTORICALLY BEEN DIFFICULT TO FIND; CONNECTING MEDICAL PROVIDERS WITH ONE ANOTHER REGULARLY, SO THEY CAN SHARE INFORMATION ABOUT THEIR MOST CHALLENGING CASES; CREATING AND MAINTAINING THE LADDER DATABASE, A GLOBAL NETWORK OF PATIENT DATA; AND CONNECTING THE INDUSTRY WITH MUCH NEEDED LOCATIONS TO HOST CLINICAL TRIALS, WITH THE BENEFITS OF HAVING PATIENTS IN PLACE WHEN THEY BECOME AVAILABLE.


RESEARCH GRANTS DUP15Q ALLIANCE CONTINUES TO PROMOTE RESEARCH TO SIGNIFICANTLY INCREASE UNDERSTANDING OF CHROMOSOME 15Q11.2- 13.1 DUPLICATION SYNDROME AND TO CREATE THERAPEUTICS TO IMPROVE THE LIVES OF ALL AFFECTED INDIVIDUALS. WE FORMALLY ENDORSE AND FUND RESEARCH, DISSEMINATE RESEARCH INFORMATION, AND PROMOTE OPPORTUNITIES FOR DUP15Q ALLIANCE FAMILIES TO PARTICIPATE IN RESEARCH STUDIES AND REGISTRIES. RESEARCH GRANTS FUNDED BY DUP15Q ALLIANCE DURING 2022 INCLUDE: ADDITIONAL FUNDING FOR THE NEWBORN SCREENING PROJECT WORKING TOWARD THE ADDITION OF CHROMOSOME 15 CONDITIONS TO EARLY CHECK, A FLEXIBLE FRAMEWORK AMENABLE TO SCREENING FOR A VARIETY OF CONDITIONS AT BIRTH; THE UCLA DISTEFANO FELLOWSHIP TO CONDUCT REMOTE ASSESSMENT OF DEVELOPMENTAL AND CLINICAL CHARACTERISTICS OF CHILDREN WITH DUP15Q SYNDROME; INITIAL FUNDING FOR A RARE EPILEPSY PARTNERSHIP AWARD GRANTED TO DR. YPE ELGERSMA'S TEAM AT ERASMUS MEDICAL CENTER TO DEVELOP A NEW MOUSE MODEL TO STUDY THE INTERACTION AND DOSE EFFECT OF THE UBE3A GENE; A COMPREHENSIVE RESEARCH LANDSCAPE ANALYSIS INCLUDING CURRENT RESEARCH TARGETS, RESEARCHERS, PROJECTS, AND FUNDING SOURCES; AND THE AHN FAMILY SCHOLARSHIP AWARDED TO AN UNDERGRADUATE AT UC DAVIS STUDYING THE EPIGENETICS OF NEURODEVELOPMENTAL DISORDERS.


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Board, Officers & Key Employees

Name (title)Compensation
Carrie Howell
Executive Di
$105,000
Lisa Feehery
Vice Chair
$0
David Gifford
Chair
$0
Joe Ivan
Board Member
$0
Steven Kadner
Board Member
$0
Anne Karch
Secretary
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$454,102
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$454,102
Total Program Service Revenue$15,600
Investment income $9,253
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $0
Net Income from Fundraising Events $76,194
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $555,149

Grants Awarded

Over the last fiscal year, Dup 15q Alliance has awarded $134,301 in support to 3 organizations.

Grant RecipientAmount

FOUNDATION FOR ANGELMAN SYNDROMETHERAPEUTICS

PURPOSE: NEWBORN SCREENING

$38,500

REGENTS OF THE UNIV OF CALIFORNIA

PURPOSE: RESEARCH

$12,610

VARIOUS

PURPOSE: RESEARCH

$83,191
View Grant Profile

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