Appy Hour
2024-07-30 20:00 - 21:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on July 30th at 8 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

Appy Hour
2024-08-10 11:00 - 12:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on August 10th at 11 AM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

Appy Hour
2024-08-15 20:00 - 21:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on August 15th at 8 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

Midwest 1 Region Patient Meeting
2024-08-17 12:00 - 14:00 (America/Chicago) | Blackberry Trails Park, 2535 Caliendo Cir, Montgomery, IL, United States
Midwest 1 Region Meet-Up Opportunity
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?

Join Region Lead, Nicole Belting, on Saturday August 17, 2024 at 12 PM Central for a meet up in Illinois. We will meet at Blackberry Trails Park for lunch. A OneSource Case Manager will be there to field questions, engage in conversations, and more. Come outside and enjoy nature. We hope to see you there! This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Date: Saturday August 17, 2024
Time: 12 PM
Address: Blackberry Trails Park (Note: plug in 2535 Caliendo Cir, Montgomery, IL 60538 at the corner of Griffin Dr. & William Dr.)

Registration is required and will close on August 3, 2024. Please register HERE.

If you have any questions, please reach out to Cindy@SoftBones.org or Nicole@SoftBones.org

HPP Empowered: August 20, 2024 at 7:00 PM (Eastern)
2024-08-20 19:00 (America/New_York) | Online
Register Today For This Informative Webinar.
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?
Join Alexion Pharmaceuticals, Inc. as they host their HPP Empowered virtual educational event on August 20th at 7:00 PM Eastern. Learn more about the event and register below. Register now!
Join here: https://hypophosphatasia.com/events

Presented by Alexion AstraZeneca Rare Disease.

Northeast Region Zoom Meeting and Chat
2024-08-22 19:30 - 20:30 (America/Los_Angeles) | Online
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Join Region Leads, Judith Harris and Chris Denune, on Thursday August 22, 2024 at 7:30 PM Eastern for a Zoom Chat. Come learn more about our Northeast in-person meeting in October and connect with fellow HPP members.

Registration is required. Please register HERE:

If you have any questions, please reach out to Judith Harris (Judith@SoftBones.org) or Cindy Reasor (Cindy@SoftBones.org).

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-08-29 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on August 29th at 8 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

Appy Hour
2024-09-05 15:00 - 16:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on September 5, 2024 at 3 PM EDT, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

HPP Empowered: September 19, 2024 at 7:00 PM ET
2024-09-19 19:00 - 20:00 (America/New_York) | Online
Register Today For This Informative Webinar.
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?
Join Alexion Pharmaceuticals, Inc. as they host their HPP Empowered virtual educational event on Thursday, September 19th, 2024, at 7:00 PM ET.
Join HERE.

Presented by Alexion AstraZeneca Rare Disease.

Join us for the 16th Annual Golf Classic 2024 and 1st Annual Pickleball Classic
2024-09-23 10:00 - 17:00 (Asia/Kolkata) | Somerset Hills Country Club, 180 Mine Mount Rd, Bernardsville, New Jersey, 07924
Join us for our 16th Annual Soft Bones Golf Classic to be held on Monday, September 23rd, 2024. This annual fundraiser supports Roger’s grandson Cannon Sittig, who lives with HPP (pictured in the 4th photo) along with his daughter, Soft Bones Chairman of the Board and Founder Deborah Nettune Fowler. Also this year, Somerset Hills has added pickleball courts to their facilities and we are excited to announce our 1st Pickleball Classic will take place on the same day.

Soft Bones 16th Annual Golf Classic
Golfers will enjoy a full day of play on a renowned course in the best ball or scramble format. There will be numerous opportunities to earn prizes for individuals and groups. Participants will have a delicious lunch before teeing off. Cocktails, drinks, and snacks will be available throughout the day. Gift certificates for dinner are included to end the day’s outing.
Thank you to Atlantic Health System for continuing to be our tournament sponsor for this important event. We hope you will join us for a day of top-notch golf to support this worthy cause.

Golf Event Schedule:
10:00 AM Registration/Driving Range open
10:30 AM Luncheon Begins
11:50 AM Welcome Ceremony (parking lot near golf cart launch)
12:00 PM Shotgun Start

Please note that this event is held rain or shine.

Soft Bones 1st Annual Pickleball Classic
As pickleball takes the country by storm, we invite pickleball enthusiasts to come out and support Soft Bones. There will be a 30 minute warm up with a pro before we start the tournament. Winner of the pickleball tournament will receive a prize. Light courtside refreshments will be served. After play, guests can enjoy a BBQ lunch. The Pro Shop will be open to all. Please bring your own paddle. Balls will be provided. If you do not have your own, there will be paddles available to use.

Pickleball Event Schedule:
9:00 AM Registration
9:30 AM Pickleball Warm Up with a Pro
10:00 AM Pickleball Tournament
11:30 AM Lunch

Register now: https://app.donorview.com/l9pWP

To register without incurring a fee, you can sign up online and mail a check, pay by Venmo at @Soft-Bones (last four digits 1081), or through Zelle at Info@SoftBones.org. In the memo section, please include your full name and write “Soft Bones 2024 Golf Classic”.

Not a golfer or pickleball player? Consider one of our sponsorships to show your support or to highlight your business.

HPP AND ME Live Zoom Chat
2024-09-24 15:00 - 16:00 (America/New_York) | Online
Register for your spot today!

Join us on September 24th at 3 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

HPP Empowered: September 28, 2024 at 1:00 PM ET
2024-09-28 19:00 - 20:00 (America/New_York) | Mitchell’s Steakhouse, 1408 Polaris Pkwy, Columbus, OH, 43240
Register Today For This Informative Webinar.
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?
Join Alexion Pharmaceuticals, Inc. as they host a LIVE HPP Empowered in-person educational event on Saturday, September 28th, 2024, at 1:00 PM ET.

Location: Mitchell’s Steakhouse
1408 Polaris Pkwy, Columbus, OH 43240

Join HERE.

Presented by Alexion AstraZeneca Rare Disease.

2024 Cannonball 5K Run, Roll, or Stroll
2024-09-29 00:00 - 2024-10-31 00:00 (America/New_York) | Online
It’s time to Run, Roll, or Stroll!
Registration for Soft Bones 3rd annual Cannonball 5K Run, Roll or Stroll is NOW LIVE! Now until October 31st, challenge yourself to finish a 5K! Complete the 5K in a single day or pace yourself to hit your goal over the course of the month. Gather your friends and family to participate locally or virtually.

Sign up directly: HERE

Did you know you can donate on behalf of someone running, rolling, or strolling? Support them during their challenge! Visit our Cannonball 5K page to learn how you can participate and support us!

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease

Midwest 2 Region Zoom Meeting and Chat
2024-10-03 19:30 - 20:30 (America/Los_Angeles) | Online
Do you live in Kentucky, Michigan, Ohio, or West Virginia?

Join Region Leads, Nichole Macknight and Sharon Talkington for a Midwest 2 Zoom Chat on Thursday, October 3rd at 7:30 PM Eastern. Connect with fellow HPP members in your region.

Registration is required. Please register HERE:

If you have any questions, please reach out to Nichole Macknight (nichole@softbones.org), Sharon Talkington (sharon@softbones.org), or Cindy Reasor (Cindy@SoftBones.org).

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Southeast Region Zoom Meeting and Chat
2024-10-12 14:00 - 15:00 (America/New_York) | Online
Do you live in Alabama, Georgia, Florida, Mississippi, North Carolina, South Carolina, or Tennessee?

Join Region Leads, Blynda Kellner and Scott Galvin, for a Southeast Region Zoom Chat on October 12, 2024 at 2PM Eastern. Connect with fellow HPP members from your region about HPP or life in general. Registration is required.

Please register HERE.

If you have any questions, please reach out to Blynda Kellner (Blynda@SoftBones.org), Scott Galvin (Scott@SoftBones.org), or Cindy Reasor (Cindy@SoftBones.org).

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Appy Hour
2024-10-16 19:00 - 20:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on October 16, 2024 at 7 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

Southwest Region Meeting
2024-10-19 12:00 - 14:00 (America/Denver) | Buca di Beppo Mesa, 1730 South Val Vista Drive, AZ, 85204, United States
Southwest Region Meet-Up Opportunity
Do you live in Arizona, Hawaii, Nevada, New Mexico, Southern California or Utah?

Join Region Leads, Sue Krug and Amy Britt for a Southwest Region Luncheon on Saturday, October 19, 2024 from 12-2 PM Mountain Standard Time. OneSource Case Manager, Joan Gustin, will be in attendance. Dr. Pamela Smith from Phoenix Children’s Hospital will be attending and on hand to answer general questions about HPP. She specializes in Endocrinology and is the current Medical Director at the Metabolic Bone and Osteogenesis Imperfecta (OI) Clinic. This is open to all Southwest Region members. Lunch will be served. We hope to see you there!

Date: Saturday October 19, 2024
Time: 12-2 PM
Address: Buca di Beppo Mesa
1730 South Val Vista Drive, Mesa, AZ 85204

Registration is required and will close on October 5th, 2024. Please register HERE.

Please do not hesitate to contact Sue Krug, at Sue@SoftBones.org or Cindy Reasor, Cindy@SoftBones.org if you have any additional questions.

Indiana In-Person Cannonball 5K Run, Roll, or Stroll Meet-Up
2024-10-19 14:00 - 16:00 (America/New_York) | Hargan-Matthews Park, 101 E Vaughn Dr., Madison, 47250, United States
We are calling all HPP members near Indiana.

Join region lead Cindy R. for an in-person Cannonball 5K in Historic Downtown Madison, Indiana. Meet us outside the entrance of Hargan-Matthews Park on October 19th at 2 PM Eastern. Walk, run, or stroll through the beautiful riverfront and main strip through historic downtown. We may even stop for ice cream!

Location:
Hargan-Matthews Park
101 E Vaughn Dr, Madison, IN 47250

Sign up here to participate in the Cannonball 5K. Make sure to join the “Indiana In-Person” group when you register.

Did you know you can donate on behalf of someone running, rolling, or strolling? Support them during their challenge! Share with your friends and family to let them know you are doing this challenge. Visit our Cannonball 5K page to learn how you and others can participate and support us!

The Cannonball 5K is sponsored in part by Alexion, AstraZeneca Rare Disease

Behind the Mystery of Hypophosphatasia
2024-10-21 07:30 - 08:30, 2024-10-29 07:30 - 08:30 (America/New_York) | Online
We are excited to share that our very own Deborah Fowler and Cindy Reasor will be featured on “Behind the Mystery of Hypophosphatasia”.

Behind the Mystery™ is a TV series dedicated to raising awareness about rare and genetic diseases through patient storytelling. Hear from four guests as they discuss HPP.

This episode will be aired on Lifetime on Monday, October 21th and Tuesday, October 29th at 7:30 AM ET.

It will also available on demand on The Balancing Act website or The Balancing Act YouTube Channel.

Join Us for an In-Person Northeast Region Meeting
2024-10-26 10:00 - 14:00 (America/Halifax) | Soft Bones Headquarters, 1719 NJ-10, Parsippany, 07054, United States
Preview Changes (opens in a new tab)
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Join Region Leads, Judith Harris & Chris Denune for a Northeast Region meeting from 10 AM–2 PM. Our guest speaker is Dr. Nickolas Tyris from NJ. A OneSource Case Manager will be in attendance. Attendees will have the opportunity to connect with others and ask questions. Lunch will be provided. We hope to see you there! View the agenda.

The deadline to register has passed. Please contact Judith@SoftBones.org or Cindy@SoftBones.org for further assistance.

Location: Green Room Communications Office
1719 NJ-10, Suite #318
Parsippany, NJ 07054

We recommend parking in the South lot.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease, and the OSAIC Foundation.

Following the meeting, attendees will have the option to participate in the Cannonball 5K Run, Roll, and Stroll. Join the Northeast Group when you sign up! Please register HERE.

Northeast Region In-Person Cannonball 5K Run, Roll, or Stroll Meet-Up
2024-10-26 13:00 - 14:00 (America/Halifax) | 9-11 Memorial Trail Parking, 11 Tabor Road, Morris Plains, NJ, 07950, United States
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Join Region Leads, Judith Harris & Chris Denune and fellow region memebers for a Cannonball 5K Run, Roll, or Stroll! Following our region meeting, attendees will have the option to participate in this annual event. We challenge you to complete a 5K. Together we can take many steps to raise awareness and vital funds for HPP.

Sign up here. Make sure to join the “Soft Bones Northeast” group when you register.

Did you know you can donate on behalf of someone running, rolling, or strolling? Support them during their challenge! Share with your friends and family to let them know you are doing this challenge. Visit our Cannonball 5K page to learn how you and others can participate and support us!

Location: 9-11 Memorial Trail Parking
11 Tabor Road, Morris Plains, NJ 07950

The Cannonball 5K is sponsored in part by Alexion, AstraZeneca Rare Disease

"The Psychological Impact of Living With HPP" Free Webinar
2024-10-29 19:00 - 21:00 (Asia/Kolkata) | Online
Join the Canadian Consortium for Children’s Bone Health (CCCBH) for a webinar on October 29, 2024, from 7:00 PM – 9:00 PM Eastern.

This webinar will feature Dr. Natalie Truba, a Pediatric Psychologist, Psychology, and Neuropsychology at Nationwide Children’s Hospital, Columbus, Ohio, entitled “The Psychological Impact of Living With HPP”. Following the meeting, stay for an “Ask Me Anything” session with medical experts, and a virtual “Catch-Up Over Coffee” with the HPP Community

This is a free online webinar but registration is required. Please register HERE.

This is part of the 2024 CARDS Virtual Series in partnership with Soft Bones Canada.

STRENSIQ Perspectives
2024-10-30 19:00 - 21:00 (Asia/Kolkata) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on October 30th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider, HPP patient or caregiver, and OneSourceTM.

Registration before the event is required to receive a link to the webinar. Register at STRENSIQ.com/events

World HPP Day Zoom Open House and Halloween Costume Contest
2024-10-30 20:30 - 22:30 (America/New_York) | Online
You’re invited to our World HPP Day Zoom Open House and Halloween Costume Contest!

Join Cindy R. and Sue K. on October 30th from 8:30 PM – 10:30 PM Eastern for a spooktacular night of chats, costumes, and camaraderie!

🎃 Come and go as you like.
🎃 Costume contest for both adults and children.
🎃 Come learn more about Soft Bones myHPP app.

Registration is required. Please register below.

Together we can celebrate World HPP Day!

Join Us for an In-Person Northwest Region Meeting
2024-11-02 10:00 - 14:00 (America/Los_Angeles) | Starbucks – Palisades Plaza, 1410 E Roseville Pkwy, Roseville, CA, 95661
Do you live in Alaska, Idaho, Montana, Northern California, Oregon, or Washington?

Please join region lead, Haley T. on November 2nd at 10 AM Pacific Time for an in-person meetup. Grab a cup of coffee and chat with members from your region. Refreshments will be provided. We hope to see you there!

Location:
Starbucks – Palisades Plaza
1410 E Roseville Pkwy, Roseville, CA 95661

Registration is required. The deadline to register is October 26th. Please sign up HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Appy Hour
2024-11-13 15:00 - 16:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on November 13, 2024, at 3 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech-savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

If you have any questions, please reach out to Cindy Reasor at Cindy@SoftBones.org.

Teen Advisory Council Event - What is Advocacy and Why is it Important?
2024-11-19 20:00 - 21:00 (America/New_York) | Online
Calling all Teen Advisory Council (TAC) teens!

Please join us on November 19th at 8 PM for an exciting presentation by patient and advocate Matt Hay from Alexion. During this meeting, learn what advocacy is and why it is important. Don’t miss this opportunity! TAC members, please check your emails to reserve your spot.

Matt Hay was a college student when diagnosed with a rare disease called Neurofibromatosis Type 2 (NF2) that would eventually take his hearing, balance, and facial movement. He turned his decades of struggle into an opportunity to help others live better lives.

Matt is a best-selling author, TEDx speaker, congressional lobbyist, public health doctoral candidate, an Ironman Triathlon and Boston Marathon finisher, and serves as the US Director of Advocacy for a rare disease biopharma company. He lives in Westfield, Indiana, with his wife (whom he’s quick to point out is the hero of his story) and their three children.

Interested in joining TAC? Please contact us HERE for more information. TAC is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-11-21 14:00 - 15:00 (America/New_York) | Online
Register for your spot today!

Join us on November 21st at 2 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

STRENSIQ Perspectives
2024-12-03 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on December 3rd at 7:00 PM Eastern for a virtual meeting. Learn how to navigate treatment with STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider, HPP patient or caregiver, and OneSourceTM.

Registration before the event is required to receive a link to the webinar. Register at STRENSIQ.com/events.
