The Marfan Foundation – Stickler Involved People (SIP) New Donation Information

NOTE:  Please be sure to change your Igive and/or Amazon donations preference to The Marfan Foundation.

Stickler Involved People (SIP) was a 501 (c)(3) organization whose mission is to educate and give support to people affected by Stickler Syndrome. Although we dissolved this not-for-profit charter effective July 1, 2024 we have merged out support group with The Marfan Foundation.

Our SIP goals were achieved through a variety of activities, such as:  periodic meetings including an annual conference, conducting educational activities, establishing working relationships with other organizations, communicating with public officials, and collecting and disseminating information concerning Stickler Syndrome.

Donations received as a result of fundraising efforts, undertaken by volunteers on behalf of SIP, were used to underwrite the following:

  • Convene at various medical conference of knowledgeable medical specialists to discuss various aspects of Stickler Syndrome (SS), treatment modalities and ideas related to better education of patients affected by SS and clinicians
  • Upgrade existing educational materials, including the SIP web site, brochures, references and etc.
  • Print and distribute of new materials to be made available to families affected by Stickler Syndrome, as well as medical professionals
  • Assist with production costs and distribution of a 30-second educational public service announcement (PSA) for our Stickler Syndrome Awareness projects.
  • Facilitate medical research to improve the identification of individuals with SS, and to outline successful treatments and other medical interventions
  • Provide youth education scholarship funds and to assist individuals to attend the annual SIP conference, based on income/need
  • Underwrite annual conference expenses such as speaker fees and group activities
  • Assist with various SIP administrative expenses associated with the above projects.

Please send your tax-deductible contribution(s) payable to The Marfan Foundation by hitting their Donation Button link below with your specifications where you would like us to use your donation towards Stickler Syndrome causes (i.e.:  Stickler Scholarship fund, Research, etc.). Please hit the Donation button at the Marfan Website and follow their instructions. Be sure to highlight that it is for Stickler Syndrome causes.

Stickler Syndrome | Causes, Signs, & Symptoms | Marfan Foundation