President’s Message (from March/April aakpRENALIFE Magazine)
Welcome to spring! I hope this issue of aakpRENALIFE finds you well and in good health. Over the past several months, the AAKP professional staff, Board of Directors, Ambassadors and Medical Advisory Board have been intensely involved in a number of important AAKP national programs. As a full team, we have been involved in several groundbreaking initiatives involving government, non-profit organizations and the private sector that will have a profound impact on the future of kidney disease.
The work done on your behalf by our professional staff: Interim Director Diana Clynes, Director of Stakeholder Operations Erin Kahle, Director of Office Operations Valerie Gonzalez, Marketing & Communications Manager Deborah Pelaez and Administrative Services Tangi Falber, have been outstanding and you should be proud of the efforts these fine professionals are making every day to serve your interests and to expand the positive impact of AAKP across the country. When you call them, email or see them at a meeting – please thank them for their service, they are among the best professionals our Board of Directors has ever had the honor to serve alongside.
At the national level, the individuals highlighted above have been managing the rescheduling of AAKP’s National Patient Meeting after its postponement last fall due to Hurricane Irma. The meeting will be June 8-10 in St. Petersburg, Florida at the Vinoy Renaissance – so please, register early! Our agenda for this meeting will be nearly the same as originally planned – with one exception – we have even more experts coming who want to hear your stories, understand your experiences and use your voices to inform policy, legislation, regulation and new innovations. By attending – not only will you learn a great deal more about prevailing in the fight to overcome kidney disease – you will help future patients by educating key influencers working to create better treatments and save lives. Remember – the AAKP National Patient Meeting is the largest kidney patient meeting in America and the perfect place to learn, relax and share the humor and battle stories that only patients understand!
Our Ambassador Program continues to expand! It has been less than a year since Erin Kahle joined Team AAKP – and her efforts to engage more of you at the state and grassroots level has been very well received. AAKP now has over 50 Ambassadors in 39 states – providing AAKP with greater reach into the communities we serve. Today, AAKP is far better positioned to engage kidney patients and loved ones in the educational programs and advocacy initiatives that equip you with important knowledge about nutrition, medications, modality choices and breakthroughs in treatment than we were less than a year ago. AAKP is also better able to fight for and protect your interests in Washington D.C., because we have one of the most sophisticated advocacy voices in the kidney space due to the combined tactics of social media, a national field organization and bipartisan relationships. To learn more on how you can become an Ambassador, please reach out to Erin at [email protected].
Below are a few key national initiatives to “watch” in the coming year – you will see them mentioned in AAKP social media feeds, Action Alerts from the AAKP Center for Patient Engagement and Advocacy, the pages of this magazine and by key leaders of each effort who will be at our National Patient Meeting. The leadership of the AAKP Board of Directors and members of our national Ambassadors are playing an important role in every one of these efforts. If you are interested in how you can become involved as a patient, contact our national office: 1 800-749-2257 or [email protected]
Kidney Health Initiative (KHI): AAKP is a founding member of KHI, a breakthrough collaboration
between our allies at the American Society of Nephrology and our partners at the U.S. Food and Drug
Administration. KHI brings together major influencers in the kidney space – including regulators,
manufactures and patients – to conduct and publish research to support innovation, clinical trials, devices,
drugs and diagnostics. KHI has its own website and an established Patient and Family Partnership Council
(PFPC) to include the patient voice and engagement in every aspect of KHI deliberation and research. Learn
more here: www.asn-online.org/khi/
Kidney Precision Medicine Project (KPMP): This recently launched initiative is housed at the National
Institutes of Health (NIH) within the National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK). The KPMP is designed as a collaborative effort of the Federal government, the non-profit sector
and private industry aimed at providing the scientific basis to advance precision medicine for kidney
patients. Learn more about the KPMP here: www.niddk.nih.gov/research-funding/research-programs/kidney-precision-medicine-project-kpmp
Clinical Trials Transformation Initiative (CTTI): CTTI just celebrated its 10th anniversary and is a
tremendous collaboration between the Food and Drug Administration, Duke University and key stakeholder
organizations, including private industry. CTTI develops and publishes research on issues related to
clinical trial policy, design, and execution. CTTI is very committed to meaningful patient engagement and
involvement and has made a number of positive impacts on the design of national clinical trials, including
those in the renal space. Learn more about CTTI here: www.ctti-clinicaltrials.org
Center for Dialysis Innovation (CDI): Based at of the University of Washington and involving key
research partners including Northwest Kidney Centers, CDI is committed to addressing the lack of greater
innovation in dialysis care and technology. With a world class team of experts, CDI has, in a very short
time, gained national attention and sparked intense interest among patients. Learn more about CDI here:
Kidney Innovation Accelerator: Launched by the U.S. Department of Health and Human Services (HHS)
at the 2017 American Society of Nephrology annual Kidney Week meeting in New Orleans, the Kidney
Innovation Accelerator is a Silicon Valley style initiate designed to inject critical funds, mostly from the
private sector, into promising technologies being developed by startup or other companies that may rapidly
advance solutions to kidney disease care. This effort will be of interest to every kidney patient in America –
and AAKP will be a strong advocate as the effort builds: Learn more about it here:
As an AAKP member, healthcare professional, caregiver or advocacy ally – thank you for continued support of AAKP and I hope you enjoy this issue of aakpRENALIFE. The future lives of patients like us depend upon the individual and combined efforts of everyone this magazine and AAKP impacts. Take care of your health – and if you want to join a noble cause that is far larger than yourself, contact us today so you can take your place alongside us in the honorable fight to save the lives of our fellow patients.
Paul T. Conway
President of AAKP
