PHELAN-MCDERMID SYNDROME FOUNDATION INC. - Florida Company Profile

5XDN6

Obsolete

Non-Manufacturer

2025-05-13

2025-10-18

RHONDA BLUMENTHAL

www.pmsf.org

2021-08-20

View on USAspending

Department of Health and Human Services

CONSORTIUM FOR AUTISM, NEURODEVELOPMENTAL DISORDERS, ANDDIGESTIVE DISEASES (CANDID) - ABSTRACT THERE IS AN INCREASED PREVALENCE OF GASTROINTESTINAL DISORDERS (GI) IN PATIENTS WITH  NEURODEVELOPMENTAL DISORDERS (NDDS) AND AUTISM.  A DIVERSE SET OF GI CONDITIONS  WITH VERY HIGH PREVALENCE IN THE AUTISM COMMUNITY ARE DEFINED AS FUNCTIONAL  GASTROINTESTINAL DISORDERS (FGIDS) BY INTERNATIONAL CONSENSUS VIA THE ROME IV  CRITERIA, THE SYMPTOMS OF WHICH LIKELY HAVE A NEUROLOGICAL BASIS (2). GI SYMPTOMS  ARE ONE OF THE MAIN DETERMINANTS FOR DECREASED QUALITY OF LIFE IN PATIENTS AND MAY  INCLUDE: GERD, IBS-­-LIKE SYMPTOMS, DYSMOTILITY, CHEWING AND SWALLOWING  DYSFUNCTION, FEEDING DIFFICULTY, GASTROESOPHAGEAL REFLUX, DELAYED GASTRIC EMPTYING,  BILIARY TRACT DISEASE, GAS BLOATING, AND CONSTIPATION (1). THE PREVALENCE OF FGIDS IN  THESE POPULATIONS MAY BE A GROSS UNDER-­-ESTIMATE BECAUSE MANY OF THESE PATIENTS  ARE NONVERBAL AND DO NOT EXPRESS PAIN AND DISCOMFORT NORMALLY (1). FAILURE TO  THRIVE CAN DEVELOP DUE TO FEEDING PROBLEMS AND GROWTH PROBLEMS PERSIST INTO  ADULTHOOD IN SOME DISORDERS. A PERCENTAGE OF INDIVIDUALS WITH NDDS HAVE G-­-TUBES  AND GJ-­-TUBES PLACED TO FACILITATE FEEDING.  PATIENTS ARE OFTEN HOSPITALIZED DUE TO THE  SEVERITY OF SYMPTOMS AND GI SYMPTOM-­-INDUCED STRESS CONTRIBUTES TO INCREASED  SEIZURE FREQUENCY AND SLEEP DISTURBANCE.      THE PROPOSED MEETING “CONSORTIUM FOR AUTISM, NEURODEVELOPMENTAL DISORDERS, AND  DIGESTIVE DISEASES (CANDID)” AIMS TO CONVENE STAKEHOLDERS FROM NIH INSTITUTES,  PATIENT ADVOCACY GROUPS (RETT SYNDROME RESEARCH TRUST, RETTSYNDROME.ORG, DRAVET  SYNDROME FOUNDATION, PHELAN-­-MCDERMID SYNDROME FOUNDATION, PTEN HAMARTOMA  TUMOR SYNDROME FOUNDATION, ADNP KIDS RESEARCH FOUNDATION, DUP15Q ALLIANCE,  ANGELMAN SYNDROME FOUNDATION, SYNGAP EDUCATION AND RESEARCH FOUNDATION,  RING14 USA, INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH, AUTISM SCIENCE  FOUNDATION, AND AUTISM SPEAKS), AND ACADEMIA IN A COORDINATED EFFORT TO DEVELOP A  SET OF SHORT-­- AND LONG-­-TERM GOALS FOR BOTH BASIC AND CLINICAL RESEARCH IN DIGESTIVE  HEALTH ACROSS AUTISM SPECTRUM DISORDERS AND OTHER NDDS TO INCREASE THERAPEUTIC  DISCOVERY FOR GI DISORDERS IN TRADITIONALLY UNDER-­-FUNDED NEUROLOGICAL RARE DISEASES.   PATIENT ADVOCACY LEADERS WILL PROVIDE NECESSARY AND COMPLEMENTARY INSIGHTS TO THAT  OF CLINICAL AND RESEARCH EXPERTS TO WRITE COMPETITIVE APPLICATIONS TO RELEVANT NIH  ICS, WITH THE POTENTIAL FOR THE CREATION OF CONTENT-­-SPECIFIC INTERDISCIPLINARY RESEARCH  TEAMS.    DURING THE MEETING, WE WILL FORM WORKING GROUPS COMPOSED OF RELEVANT EXPERTS IN  THESE FIELDS, SO THAT AT THE CONCLUSION OF THE CONFERENCE, MOMENTUM FOR THESE GOALS  CAN CONTINUE. SPECIFICALLY, WE AIM TO (1) BEGIN THE DEVELOPMENT OF A CATALOG OF  EXISTING CLINICAL AND GENETIC DATA REPOSITORIES MAINTAINED BY INDIVIDUAL  ORGANIZATIONS WITH RELEVANCE TO EXPLORATORY RESEARCH INTO DIGESTIVE DISEASES IN THE  AUTISM AND NDD COMMUNITY, (2) PUBLISH A SUMMARY OF THE DISCUSSION AND CONSENSUS  IN THE SCIENTIFIC LITERATURE, AND DEVELOP A WEB PAGE AS A RESOURCE FOR SHARED  REPOSITORIES AND FACILITATION OF COLLABORATION, AND (3) INFORM POSTGRADUATE MEDICAL  EDUCATION FOR PEDIATRIC AND ADULT GI FELLOWS FOCUSED ON THE NEEDS OF PATIENTS WITH  ASD.

22200.00

0.00

0.00

2021-03-20

View on USAspending

Small Business Administration

TO AID SMALL BUSINESSES IN MAINTAINING WORK FORCE DURING COVID-19 PANDEMIC.

0.00

72175.00

72175.00

2020-04-21

View on USAspending

Small Business Administration

TO AID SMALL BUSINESSES IN MAINTAINING WORK FORCE DURING COVID-19 PANDEMIC.

0.00

-196.00

72200.00

2020-04-14

View on USAspending

Small Business Administration

TO AID SMALL BUSINESSES IN MAINTAINING WORK FORCE DURING COVID-19 PANDEMIC.

0.00

72396.00

72200.00

04-3673104

Educational Organization, Local Association of Employees, Horticultural Organization, Business League, Voluntary Employees' Beneficiary Association (Govt. Emps.), Mutual Ditch or Irrigation Co., Cemetery Company, Other Mutual Corp. or Assoc.

2003-04

Medical Research: Specifically Named Diseases Research

Type of organization and use of contribution: A public charity. Deductibility Limitation: 50% (60% for cash contributions)

8

$72,175

2021-03-20

Paid in Full

100

$72,175

Unanswered

Unknown/NotStated

Unanswered

Unanswered

$72,567.95

Truist Bank

Payroll: $72,172
Utilities: $1

10

$72,396

2020-04-14

Paid in Full

100

$72,200

Unanswered

Unknown/NotStated

Unanswered

Unanswered

$72,773.59

Truist Bank

Payroll: $72,200