2023-07-20T07:53:19-07:00 2022-12-31 364750860 Russell CPAs 1111 Exposition Blvd Ste 100 Sacramento CA 95815 990 2022-01-01 204792248 Neuropathy Action Foundation NEUR 7145509155 1950 Old Tustin Avenue Santa Ana CA 92705 Christopher DeSantis Executive Director 2023-07-20 true Christopher DeSantis 999009999 true Jason Russell CPA P00810533 9169669366 3 AAL1 IAL1 FAL1 2022 2023-04-26 12:10:37Z Dominick V Spatafora 1950 Old Tustin Avenue Santa Ana CA 92705 69500 false X www.neuropathyaction.org To educate the general public, healthcare providers, patients and decision makers on what Neuropathy is and to help Neuropathy patients obtain access to individualized treatments. 9 9 0 0 55702 69458 3500 0 16 42 0 59218 69500 0 0 0 0 7530 22534 75326 22534 75326 36684 -5826 287362 283966 149 287362 283817 To educate the general public, healthcare providers, patients and decision makers on what Neuropathy is and to help Neuropathy patients obtain access to individualized treatments. false false 52729 Following a successful five year Multifocal Motor Neuropathy MMN education campaign which resulted in three patient videos, thousands of new grassroots advocates, and over 1 million ad impressions we shifted our educational efforts to Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In 2021, the Neuropathy Action Foundation conducted and announced the results from an international Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Quality of Life (QOL) Patient Survey. The survey focused on three primary areas: timely and accurate diagnosis, efficacy of treatment, and the impact of the disease on patients quality of life. This survey is important because early and accurate diagnosis can mean the difference between CIDP patients being successfully managed or becoming permanently disabled. Timely treatment can make a big difference in patients lives. The NAF believes these survey results will increase awareness and action among providers, the public and public policy officials. The majority of the 297 participants completing the survey were males (62%) from the United States (88%) with respondents from five other countries contributing to the results. While 70% of respondents reported that they were diagnosed between the ages of 41 and 65 years old, more than 54% of those completing the survey reported that it took more than one year to be accurately diagnosed. The majority of the misdiagnoses were made by Neurologists (60%) and Family Care Providers (21%). These results demonstrated that it is very clear that we need to do a better job at accurately diagnosing these patients. The sooner we can identify CIDP, the sooner we can start individuals on the proper therapy, alleviate their symptoms and improve their lives. When asked about treatment options, 76% reported receiving intravenous immunoglobulin (IVIg) and 11% reported receiving subcutaneous immunoglobulin (SCIg). A reduction in symptoms was reported within three months of their first Ig treatment by 68% of respondents. Only 7% reported that Ig did not help them manage their symptoms. If recommended by their Neurologist, 67% would consider SCIg treatment. Interruptions in treatment due to COVID-19 were experienced by 39% of the respondents. Nearly 30% of all participants stated that CIDP often or always interferes with their employment and 51% said it impacts their quality of life. Loss of balance (51%) and weakness in legs (49%) were the most common symptoms before starting treatment. CIDP has a direct impact the participant's emotional wellbeing. Fatigue was reported by 43% of the respondents. Some 46% reported feeling depressed and 28% of those completing the survey said they had time when they felt hopeless. Feeling embarrassed by their physical limitations was a concern for 49% of respondents. The survey results illustrate the complexity of CIDP and the impact it can have on peoples lives. The good news is that the data also shows that treatment helps many individuals.Other 2021 services provided and accomplishments include:The NAF continued its bi-monthly Patient Voice newsletter.Helped over 175 patients with medication access issues.Answered over 1,000 patient emails/phone calls and either emailed or mailed over 500 informational brochures to patients across the U.S.Continued a Diabetic Peripheral Neuropathy (DPN) awareness campaign in Spanish and English.Through our website (which is constantly updated) and patient brochures the NAF reached millions of patients and interested parties obtain the necessary resources, information and tools to access individualized treatment to improve their quality of life.Continued to partner with numerous state and national coalitions and organizations to ensure individualized care and access to treatments and medications through policy, legislative, grassroots and traditional/social media efforts. 52729 true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 0 0 false 0 false false false false false false false 0 false false false false false false false X 9 9 false true false false false false false true true false false true true true true true false true false false CA X Medical Association Management 7145509155 1950 Old Tustin Ave Santa Ana CA 92705 X Dominick V Spatafora President 11.50 0.00 X 0 0 0 Christopher DeSantis Executive Dir. 4.00 0.00 X 0 0 0 James D Lee JD Director 1.50 0.00 X 0 0 0 Dustin Corcoran Director 0.25 0.00 X 0 0 0 Leslie Macgregor Levine Secretary 1.50 0.00 X 0 0 0 Christopher Buchanan Director 0.00 0.00 X 0 0 0 Richard S Zimmerman MD Director 0.23 0.00 X 0 0 0 Kathleen S Creason Treasurer 0.23 0.00 X 0 0 0 Sarah J Fullerton Director 0.00 0.00 X 0 0 0 0 false false false 0 42755 26703 69458 Auction Items Exhibit Income Registration 0 42 42 0 0 0 0 0 0 0 0 69500 42 0 0 0 0 0 0 0 0 0 0 8595 6017 1719 859 0 800 560 160 80 0 0 0 404 283 81 40 2793 1955 559 279 3 2 1 0 0 2613 1829 523 261 2379 1665 476 238 0 0 0 0 0 400 280 80 40 Patient Education/Awareness 55000 38500 11000 5500 Utilities 1575 1103 315 157 Patient Relations & Advocacy 679 475 136 68 Taxes & Licenses 75 53 15 7 10 7 2 1 75326 52729 15067 7530 126859 123605 160319 160361 0 0 0 0 0 0 184 0 0 0 0 0 0 0 287362 283966 149 0 149 X 287362 283817 287362 283817 287362 283966 -5826 2281 X false false false X 93535 111852 112369 55702 69458 442916 0 0 0 0 93535 111852 112369 55702 69458 442916 0 0 442916 48 48 23 16 135 0 48 48 23 16 135 0 0 93583 111900 112392 55718 69458 443051 0.99970 0.99960 0.00030 0.00040 X Form 990, Part VI, Section A, Line 3 Day to day activities including meeting planning, maintaining membership records and website, and correspondence are delegated to the manant company. Form 990, Part VI, Section B, Line 11b The management company forwards a copy to the board of directors for review and comment or corrections if necessary before filing. Form 990, Part VI, Section B, Line 12c The board of directors and key employees are required to complete an annual conflict of interest disclosure form. The board reviews and potential or actual conflicts and takes any necessary action to resolve the conflict. Form 990, Part VI, Section B, Line 15a The board of directors must review and approve any fee changes to the management contract. There are no employees. The original contract fee arrangement has not changed. Form 990, Part VI, Section C, Line 19 The organization does make available all governing documents to the general public upon request.