2021-02-13T15:29:08-08:00 2020-06-30 461447627 Sandy Born Rich CPA PC PO Box 2002 Rockwall TX 75087 990EZ 2019-07-01 834086943 Myhre Syndrome Foundation MYHR 2026569473 25 Creekwood Cir Richardson TX 75080 Justin C Smith President 2021-02-13 true Sandy Born Rich P01062712 9727223300 2019 2022-09-23 18:48:47Z X X X www.myhresyndrome.org X X 49157 X 49157 0 0 0 0 49157 22133 3723 25856 23301 23301 23301 0 23301 0 23301 The goals of Myhre Syndrome Foundation are:1. To educate the public and the medical community to ensure early diagnosis and proper treatment;2. To promote safe and effective treatments through advocacy, research funding and a comprehensive patient registry;3. To provide a caring and supporting community for Myhre patients and families. Through our grant approval process, we awarded Mass General Hospital with their ongoing support of the Myhre Syndrome Clinic. This was to promote clinic days for the following and support of patients, the hiring of an assistant and for research of the disease. This directly impacts over 25 patients and families and the research could benefit all those diagnosed with Myhre Syndrome. 3723 22000 The Foundation started an online patient clinical registry for the collection of clinical and geographic data through Coordination of Rare Diseases at Sanford (CoRDS). This was a free online registry. The impact is for furthering resarch by compiling clinical data. This could impact all Myhre diagnosis. 3723 Justin C Smith President 5.00 0 Katherine Young Vice President 5.00 0 Margo Veitch Secretary 5.00 0 false false false false false false false 0 0 0 false 0 0 false Justin C Smith 25 Creekwood Cir Richardson TX 75080 2026569473 false false false false false false false false false false false NONE NONE true X 49157 49157 0 0 49157 49157 0 49157 0 0 0 49157 X 0.00000 Grants and Similar Amounts Paid In Excess of $5,000.1 Class of Activity: Patient support | Donee's Name: Mass General Development | Donee's Address: 55 Fruit Street Suite 6C Boston MA 02114 | Cash Amount Given: $22000 Other Expenses.1001 Advertising and Promotion $1848 Other Expenses.1012 Insurance $1236 Other Expenses.1 Software Subscriptions $639