NF2: While we Wait

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$2,280.35

Raised

Donations

$100,000

Goal

Help Reach $20,000 by January 1, 2018


          Neurofibromatosis Type 2 (NF2) results in slow growth of tumors and other health problems that starts at birth, even if not seen until teen years or much later in life. There is no cure for the genetic condition NF2, and unfortunately, all tumor-drug treatments in clinical trials have a maximum potential for tumor size reduction less than 20%. The simple truth is until gene therapy immunotherapy, and stem cell research is ready money donated to cures is simply donations to delays of tumors. 


         'NF2 Information and Services Inc.' is looking for donations to help share information on options that can help while we wait for research in the new fields to develop. No cure does not mean people with NF2 have no options now. 


         'NF2 Information and Services Inc.' is looking to help doctors and families fighting NF2 to find information on pros and cons of options to improve Quality of Life while we wait for a cure.


Donations needed for growth to help to fund:  

• 1 year GoToMeeting Hosting for interviews with NF2 Medical  Specialists about treatment options - live and to watch after on YouTube 

 • Captioning for live Interviews online 2 sessions (CART operators cost is $500 per event)
• graphics tools for better descriptive images
• reach more people with NF2 and doctors
• website costs

• basic cost-of-operations

 

NF2 Information and Services Accomplishments

  1. Up to date important information about Genetics, Diagnosis, and possible NF2 health issues
  2. An Avastin Informal Study with result conclusions that helps individuals stay on Avastin longer
              The study helped reach conclusions previously unknown about side effects, and project collaboration is helping people on Avastin remain on the treatment longer for better long-term results.
  3. Graphics to help explain medical terms
  4. Comprehensive and constant build of information about NF2 at www.nf2is.org
  5. Constant follow-up and build of NF2 related Clinical Trials
  6. Pros and cons of available treatment options 

Donations to "NF2: While we Wait" are donations to NF Information and Services

About  NF2 Information and Services Inc. 

         NF2 Information and Services, Inc. 501 public nonprofit charity, runs https://www.nf2is.org/about_us.php.


NF2 IS, is run by people with NF2 and families of people with NF2, who are looking to help others like themselves live with the best Quality of Life.  

         Services are not provided by the charity NF2 IS, services are simply a share of information of organizations to contact for help with different issues. The NF2 IS Board Members and Founder have a strict policy to guarantee no bias of information for services can occur by agreeing to not accepting sponsorship from any medical source. NF2 IS does not have goals to help individuals with personal medical issues, only clarity of facts to stop the serious issue of misinformation because few doctors know what NF2 is, and have never even met an individual with NF2.


         Every dollar is important and in things I have done to help others with very little funding should be proof enough of what I could do with every $1 donated. Please help by donating to NF2 Information and Services.


Fundraiser Goal: $100,000

         The listed goal of $20,000 is considerably less than what the charity needs to meet its goals properly but is the total of minimum cost-of-operations to help the organization get a proper financial start to file for grants to help in bigger ways in 2018. Some of these costs include; website fees, webinar (online meeting) fees, captioning fees, and advertisement fees to connect with more doctors about Neurofibromatosis Type 2. NF2 Information and Services is only funded by fundraiser money at this time.

         Reaching the goal will also allow for online live discussions with NF2 specialists about trials, treatment and physical therapy with captioning. (11/30/17) - CEO and Founder - Lori Davila lori@nf2is.org 


         If you have questions on the financial breakdown of the listed goal total, email the CEO.


Donations by Mail
         Checks or money orders can be sent by mail and made payable to
                  NF2 Information and Services, Inc.
                  PO Box 714, Upton, NY 11973



NF2 Information and Services, Inc., which also runs www.nf2is.org, has been a Corporation since September 2013, and a charity under section 501(c) (3), with Public Charity Status of 509(a) (02) since July 2014. EIN#: 46-3767757 Board Members and CEO are individuals with NF2 or immediate family of individuals with NF2, including the Founder/President/Chief Executive Officer (CEO). Medical advice should always be sought by consultation with a medical professional. The NF2 Information and Services organization and affiliated website, are not run by medical professionals.