This month, AAMDSIF finalized its merger with the PNH Research and Support Foundation that we first announced to you on Nov. 1.
When nonprofit allies share a long history of successful engagement for the same cause, it stands to reason that they’ll get married someday. After years of close collaboration, it was clear to both organizations that by joining forces, we will become stronger together – as well as more efficient and effective in the services and support we provide to our patients and families. In much the same way that each of you are stronger by virtue of being members of our community, we want to enhance our ability to better meet your needs.
We believe it’s essential to stress that the vast majority of what the unified foundation will do for PNH patients will remain the same. An important component that we intend to update and more fully develop is the PNH Online Forum – the private and secure place where patients meet, chat, and share information in a safe setting.
We will be relying on you to guide us in this endeavor and will soon be sending out a survey to solicit your advice and take suggestions about how you’d like the new forum to function. Once we have your feedback, we will fold it into the design of a whole new platform that will be broken out into disease-specific conversations. In this way, aplastic anemia, MDS and PNH patients will all have their own private, separate forum destination on the same user-friendly platform.
We’re also trying to anticipate the kinds of questions that the merger might bring to mind and will do our best to address them here. Please feel free to contact us if you have any thoughts or concerns that are not covered below:
Q: The PNH Patient Committee has always played a strong role. Now what?
A: That committee still has a valuable role to play and will be folded into AAMDSIF’s Patient Education Council. We also want to include them on our new Ambassador Advisory Council to help get that program up and running., and their assistance in reviewing PNH-related grants will remain crucial.
Q: Will there be any changes to the PNH travel grant process, or the protection of patients’ sensitive financial data that it involves?
A: No, not at all. The travel grants are an important part of the PNH program, and we hope to be able to learn from existing procedures and, if possible, expand that benefit and extend it to patients with other bone marrow failure diseases. We will be reviewing the process to ensure sensitive financial data is fully protected and that we are as efficient as we can be with distributing the grants to those in need.
Q: What will the merged organization’s relationship be with NORD?
A: Both foundations have historically had strong relationships with NORD. That won’t change, except for the strong possibility that we’ll have even greater opportunities to collaborate with this membership organization.
Q: How will the former PNH committee be tapped in the future in regard to peer support, for which we’ve been specially trained?
A: We intend to boost and refresh both the Peer Support Connection and Community Connections programs this year, both of which require the expertise of the trained volunteers of this committee.
Q: How will AAMDSIF incorporate PNH into its name?
A: We recognize how clumsy it would be to add a third disease name to an already long string of letters, which is why we are currently working with leading experts to explore changing the foundation’s name to something more universal and pronounceable. Stay tuned for more details on this process as we will be asking for your assistance in choosing the best name for our new organization.
Thank you for your patience while we tackle the IT and branding issues that accompany our merger.
With warm regards,