Form 990 for tax year 2022

Totals

Total revenue

$555,149

Total expenses

$548,054

Contributions and grants received

$454,102

Grants paid

$139,301

Program service revenue

$15,600

Investment income

$9,253

Other revenue

$76,194

Total assets, end of year

$603,477

Total liabilities, end of year

$80,073

Net assets or fund balances, end of year

$523,404

Program services expenses (Part IX)

$432,496

Management and general expenses

$67,693

Fundraising expenses

$47,865

Program service expenses (Part III)

$432,496

Program services were 78.9% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• 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.

  Expenses $300,946 · Grants $7,751 · Revenue $15,600

• 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.

  Expenses $20,025 · Grants $20,025

• Withheld by Nonprofiteer: this text may name a private individual.

  Expenses $111,525 · Grants $111,525

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.

Grants on this return

• VARIOUS

  $83,191

  RESEARCH

• FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS

  $38,500

  NEWBORN SCREENING

• REGENTS OF THE UNIV OF CALIFORNIA

  $12,610

  RESEARCH

Provenance

Return type

form_990

Tax year

2022

Filed

16 October 2023

IRS schema version

2022v5.0

Source object

202343179349307714

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