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Hemo Alliance Newsletters

Notes from the Community, May 2021


Notes from the Community

A. ANNOUNCING: HEMOPHILIA ALLIANCE FOUNDATION 2nd-ANNUAL “LARGE” GRANT

The Hemophilia Alliance Foundation (HAF) is excited to offer its 2nd-annual funding opportunity for a “Large” Grant. This funding will allow an organization to fund a larger-scope project than what they are able to do with current HAF smaller grants. This will be a one-year grant with projects completed within the year.

The Grant Guidance and online application form are available here: https://hemophiliaalliancefoundation.org/grant-information

Purpose
The goal of this grant is to encourage larger scale, creative, and unique projects, as well as to serve the community with resources that will improve the lives of patients with inheritable blood disorders. With this larger funding amount, the “Large” Grant aims to encourage projects that are larger in scope, unique, and generate resources that can be shared with the whole community.

Requirements

  1. A non-profit 501 (c) (3) organization
  2. An organization that has a history and documented track record of serving the inheritable blood disorders community
  3. Completion of the application with all required documents attached
  4. The grantee will be responsible for a conference call meeting with HAF board members during and/or after project completion to discuss the process (e.g., what worked, what could be improved)
  5. These funds may not be used in conjunction with grants from the Hemophilia Alliance.

Collaborative projects between more than one organization are encouraged and given high priority.

Grant funds will NOT be awarded for the following costs:

  1. Administrative or overhead costs may not exceed 8% of budget
  2. Basic, laboratory research, or related equipment
  3. Underwriting or sponsorship of fundraising events
  4. Construction costs
  5. Recurring costs, such as:
    • Office rent and utilities
    • Monthly phone bills for the applicant organization
    • Salaries of staff not related to the grant application

Timeline

Applications are currently being accepted through June 30, 2021. The project period will begin on September 1, 2021 and conclude by August 30, 2022.

Questions

If you have any questions about this “Large” Grant process, please contact the Hemophilia Alliance Foundation Grant Committee Co-Chairs, Amy Marquez, at amy@hemophiliaalliancefoundation.org, or Stephanie Raymond, at stephanie@hemophiliaalliancefoundation.org.

B. HFA To Host Mental Health First Aid Training Opportunity

Hemophilia Federation of America (HFA) is pleased to offer free Mental Health First Aid training through an internationally renowned program by the National Council for Behavioral Health as part of HFA’s 2021 Mental Health and Wellness Initiative.

HFA will be offering four trainings throughout 2021 for bleeding disorders community members ages 18 and over. The training is also open to the staff of HFA’s member organizations and hemophilia treatment center staff throughout the country.

The training includes a two-hour pre-work commitment, plus a four- and one-half-hour live session online. Participants who complete both sections of the course will receive a Mental Health First Aid certificate indicating they have been trained in recognizing the signs and symptoms of common mental health and substance abuse challenges, how to have an effective conversation about those challenges, and where to direct people for mental health care and support. Click here for more information about HFA MHFA trainings.

The next training cohorts will meet on the following dates:

  • Saturday, June 26th
  • Saturday, September 25th
  • Saturday, November 13th

Mark your calendar. More details will be shared as the dates approach.


Also in this Issue…

Notes from Joe
· Update on the Alliance’s Work on an Intranasal DDAVP

Washington Update
· Hill Day Recap

Legal Update
· 340B Program Updates

Payer Update
· Revenue Cycle & A/R Management Assistance

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

NameEmailPhone
Jeff Blakejeff@hemoalliance.org317-657-5913
Jennifer Borrillo, MSW, LCSW, MBAborrillo@hemoalliance.org504-376-5282
Jeff Amondamond@hemoalliance.org608-206-3132
Jennifer Andersjennifer@hemoalliance.org954-218-8509
Angela Blue, MBAangela@hemoalliance.org651-308-3902
Karen Bowe-Hausekaren@hemoalliance.org717-571-0266
Zack Duffyzack@hemoalliance.org503-804-2581
Michael B. GlombMGlomb@ftlf.com202-466-8960
Johanna Gray, MPAjgray@artemispolicygroup.com703-304-8111
Kiet Huynhkiet@hemoalliance.org917-362-1382
Elizabeth Karanelizabeth@karanlegalgroup.com612-202-3240
Kollet Koulianos, MBAkollet@hemoalliance.org309-397-8431
Roland P. Lamy, Jr.roland@hemoalliance.org603-491-0853
Dr. George L. Oestreich, Pharm.D., MPAgeorge@gloetal.com573-230-7075
Theresa Parkertheresa@hemoalliance.org727-688-2568
Mark Plencnermark@hemoalliance.org701-318-2910
Ellen Rikereriker@artemispolicygroup.com202-257-6670