New England Donor Services’ Post

I'm giving blood, this arvo. Patients need lifesaving blood for emergencies, childbirth, surgery, cancer treatment and to treat blood and medical conditions. Give an hour of your time (and a pint of your blood, obvs...) and you could save three lives. More blood donors are needed. There is currently high demand for rare blood types that are more common in people of Black heritage. O negative donors are needed, urgently. O negative blood can be used in transfusions for any blood type. Type O is routinely in short supply and in high demand by hospitals – both because it is the most common blood type and because type O negative blood is the universal blood type needed for emergency transfusions and for immune deficient infants. B negative donors are needed. Please, if you can, book an appointment to donate (https://lnkd.in/e6-C38Ds). #BloodDonation #BloodDonors #GiveBlood #BloodDonor #DonateBlood #SaveLives #NHS #ThisIsAmazing

Everyone, the following message is from my office manager, talking in the first person obviously, it’s a desperate situation and my CEO has agreed to donate a certain amount of money for every person who signs up to get tested to donate. So please read this and help out: “Hey guys - one of my friends/old co-worker just had her first baby boy on January 21st. He was born with SCID (bubble boy syndrome). He will not survive much longer without a bone marrow transplant. They are looking for somebody who is a perfect match. I would do ANYTHING to donate but with my medical history, I am not able to. Please visit the "be a match" medical guidelines and if you feel so inclined or know anybody who would be interested to do a quick cheek swab to be a match. All the prayers for this sweet little boy and my friends. This is their most recent update: Luka is currently home with mom and dad under complete isolation. They are not allowed to leave the house unless it is to take him to CHOP. We wanted to again thank everyone again who signed up to be a donor. The support has meant more to them than you can ever imagine. Could there already be a match in the system? Yes, but because Luka needs to have the bone marrow transplant immediately the more people who signed up the better chance of a 10/10 match. Luka is going to Philadelphia next Wednesday to meet with the team from CHOP. His labs were done already but it takes a few weeks to map it. If someone is a match, how do they get the bone marrow? The bone marrow from our understanding is taken from the pelvic region. It is a same day procedure under general anesthesia. There will be some general discomfort for a few days after the procedure but nothing none of us would not be able to handle. Is there a way to see if we are an exact match with Luka without joining the national registry? Unfortunately, if there were more time you would be able to be tested to match with only Luka, however, since the bone marrow transplant is needed immediately, the team at CHOP is constantly checking the national registry daily to find Luka’s 10/10 match. With that said, the fastest and most efficient way to help would be to join the national registry. What happens after the bone marrow transplant? Luka will remain at CHOP for up to 4 months. This means Mike and Kirstyn will have to either stay in a hotel or sub lease an apartment in Philadelphia. They will have to pay for meals daily along with fuel and tolls. The financial burden on them is beyond what any of us can ever imagine. Mike and Kirstyn cannot thank you all enough for your prayers, donations, and willingness to see if you are a donor. Please keep them and especially Luka in your prayers. This time next year Luka will be a healthy normal boy and can enjoy a normal life, and all thanks to you and the team at CHOP. GoFundMe Link: https://lnkd.in/eVNGAaXB Be The Match Link https://lnkd.in/eDBv3u7t “

It is #GivingTuesday and I hope my connections will consider donating to The Endometriosis Coalition. https://lnkd.in/eDKpkU57 #Endometriosis a disabling disease that has such low awareness of it's true impacts on women and girls. It is not just a bad cycle, its a risk for organ loss and permanent, severe damage to your body without timely, correct intervention. Timely and correct interventions do not happen because the American College of Obstetricians and Gynecologists (ACOG) has not adjusted the standard of care away from dangerous laparoscopic surgical methods that actually speed up the diseases ability to progress in the body. ACOG's resistance to not updating the standard of care puts hundreds of thousands of women on the line all in America. There are 167.5 million women in America. 16,500,000 are diagnosed with Endometriosis and another 16,500,000 likely have it and are not diagnosed. The average time it takes to get diagnosed in America is 10 years. We endure 10 years of suffering and medical gaslighting until we finally find one doctor who believes that our pain is real and will help us. In contrast more than 200 million women in the world live with this disease. There are MAYBE 300 specialists now in the world who are equipped to handle this disease and produce a positive outcome for a patient with endometriosis. and in contrast to what we know about other diseases, we don't know much about the cause or why it happens. Your options for treatment are: A bad lap surgery every 6 months to a year A good lap surgery that lasts 3-10 years Birth Control, with horrendous side effects Advil, which is obviously temporary Lupron, which gives you arthritis at 30 among other side effects That's it! The team at the Endometriosis Coalition is advocating for legislative change, including that endometriosis be added to the list of conditions to qualify for disability. I hope you'll consider donating, or at least sharing this post for a little awareness. #endometriosisawareness #warrior

We agree wholeheartedly with Dr. Joshua Mezrich in STAT that organs “are just too precious to go to waste” and that strong collaboration between OPOs and transplant centers is needed to tackle the critical issue of organ non-utilization. More than 20% of organs recovered by OPOs go unused when they should instead help save the thousands currently awaiting life-saving organ transplants. Dr. Mezrich shares bold ideas that could make a difference while also establishing greater accountability and equity for the organ donation and transplant field. In short: “We need to get these organs to the surgeons and programs willing to use them, for whatever patient they feel will benefit from them."    Read more at: https://lnkd.in/d7-y6w39 #OrganDonation #DonateLife #OrganTransplant

How NF2 affects me We want you to meet the real life people affected by NF2. We are each affected differently but are linked together by our rare disorder NF2 related Schwannomatosis (NF2). People with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Jo who was 29 years old when her NF2 journey started back in 1999. " I still remember the day as clear as it was yesterday. No-one was sure I was going to make those millennium celebrations! Up until that point, I had a few episodes of losing my balance and my hearing had deteriorated a little by the time I went to the doctors and MRi scans revealed bilateral vestibular schwannomas. Emergency surgery was scheduled for 5 days time when they removed the right sided tumour in a 14 hour brain surgery op which left me deaf on that side with facial palsy. I had severe dry eye problems which resulted in an extra hospital stay. its taken me a long time to get to where i am today" NF2 is a life long genetic condition There is no beginning, middle or ending to any of our stories, no remission or breaks. There are no bells to ring. Treatment options are surgery/radiosurgery/chemotherapy which often results in loss of function of the involved nerve and severe disruption to life. NF2 IS FOR LIFE Reading real life stories about how NF2 affects people helps others to understand why we need better treatments. Please help us to make that happen by donating to research, sharing your story & raising awareness. The Big Give are DOUBLING your donation during the #ChristmasChallenge, please give whatever you can afford to accelerate our research. One donation, Twice the impact!! TOGETHER WE CAN #ENDNF2 We can't do it without you!

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. We are each affected differently & people with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Nicole who was diagnosed with NF2 at 16 years old. Although had been hard of hearing since 6 and always had bad balance issues. "Unfortunately when diagnosed my right sided acoustic neuroma was 4.2cm therefore the only option was surgery. I underwent 12.5 hour brain surgery in Glasgow when I was 16 and had to miss 1 year of school. I was left completely deaf in my right ear and had facial palsy. I now have a gold weight in my eye. I still to this date 12 years later suffer dry eye issues". Nicole has recently gotten a cochlear implant. NF2, is a lifelong genetic condition, unyielding and unrelenting. There is no middle or ending to any of our stories. Surgery, radiosurgery, and chemotherapy—are the only options we have. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

Learn about the four types of organ donation!  → Deceased organ donation: This happens at the time of the donor's death and can save the life of someone in need of a transplant.  → Living organ donation: This type of donation can save TWO lives! Kidney and liver patients who receive a living donor transplant often have a better chance at a successful transplant much sooner.  → Pediatric organ donation: Children in need of organ transplants require child-sized organs, which is why pediatric donations are so important. There are currently 2,000 kids on the waiting list, and 25% of them are under 5 years old.  → Vascularized composite allografts (VCAs): This type of donation involves the transplantation of multiple structures, such as skin, bone, and muscles. You may have heard of hand and face transplants - these are examples of VCAs.  Organ donation can truly change lives and make a difference in the world. Let's spread awareness and encourage others to consider becoming a donor.  #donatelifeleavealegacy #organdonation #fourtypesoforgandonation #typesoforgandonation

As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments. These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. We are each affected differently & people with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Epilepsy, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy ... & much more! Today we meet Hannah, her NF2 journey started aged 14. Hannah has suffered severe, life changing side effects from Avastin infusions. " So far, I’ve had yearly MRIs since I was 14. Countless injections, bloods taken, eye, ear tests, Hormone treatments more needles… and now finally Avastin treatment so I can keep my tumours small so I can keep my hearing for a bit longer. Avastin makes me tired and sick" NF2, is a lifelong genetic condition, Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function. NF2 is for life, an unwavering companion. There is no cure, no magic elixir to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities Please consider donating to research, sharing your story & raising awareness. You can donate here to our research at https://lnkd.in/euWUGuTS #endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2cure #nf2treatment #nf2gene #nf2chromosome22 #nf2trials #nf2diagnosis #nf2lifeexpectancy #nf2prognosis #nf2research #nf2ismyteam #nf2awarenessday #nf2journey #StrongerTogetherAgainstNF2

Personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families. #ENDNF2

NF2 is for life, an unwavering companion. It defies the boundaries of time, refusing to be confined to mere moments. There is no cure, no magic wand to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities. Please support our research by donating to #ENDNF2 https://lnkd.in/ezPZxY2P